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2012 Chapter Reports

Argentina
Australia
Azerbaijan
Belgium
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LIGA ARGENTINA CONTRA LA EPILEPSIA (LACE)

Summary of Activities in 2011 and 2012

2011

  • We organized the Annual Meeting with special meeting subjects of: refractory epilepsy definition, new epilepsy and seizure classification and the ILAE/ANA guidelines about use of antiepileptic drugs. We were proud to have the participation of Dr Jacqueline French from the USA, and Drs Marilisa and Fernando Cendes, from Brazil
  • We sponsored the Second Regional Latin American Congress that was held in Cordoba (Argentina) in April 2011. The Congress focused on epilepsy surgery
  • In June 2011, along with the epilepsy group of the Argentinean Neurology Society, we organized the Second Legal and Social Epilepsy Implication Symposium, focused on epilepsy law, disability certification and drivers license in Argentina.

2012

  • We organized our National Congress, 21-22 September. We were proud to have Drs Michael Duchowny, Angus Wilfong, and Kimford Meador from the USA participate
  • LACE – ILAE has provided three awards to the best three scientific works to participate in the last Epilepsy Congress in San Diego
  • We sponsored a regional Latin American meeting that was held in Buenos Aires (Argentina) in June 2012, focused on epilepsy surgery
  • We also have organized scientific activities in different provinces in Argentina.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

We have also started to work in the epilepsy Latin American program, Strategic Plan on Epilepsy, together with PAHO and the Health Minister of Argentina. We are organizing an educational program on epilepsy to primary medical care providers in Argentina.

Educational Activities

Different meetings on epilepsy in all Argentinian provinces and we prepared didactic material to doctors, nurses and general public on epilepsy.

Activities in Conjunction with Local IBE Affiliate

Many social and scientific activities

Future Plans

  • To organize our national congress: speakers P De Jonghe, G Cappovilla, P Veggiotti. Pre-congress meeting between LACE and LICE
  • To continue working in the epilepsy Latin American program (Strategic Plan on Epilepsy) together with local PAHO and the Health Minister of Argentina.

Officer Election Date

24 January 2013

Report By

Roberto Caraballo, President

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EPILEPSY SOCIETY OF AUSTRALIA

Meeting

Annual Scientific Meeting

Summary of Activities in 2011 and 2012

The Epilepsy Society of Australia conducts an Annual Scientific meeting in addition to other national meetings to improve and promote knowledge and research in the field of the epilepsies. Our Society works with the Joint Epilepsy Council of Australia in other endeavors to achieve these goals. The Society is the expert advisory body to the Australian and New Zealand Association of Neurologists.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Members of the Epilepsy Society of Australia (ESA) are active contributors to both the Commission on Asian and Oceanic Affairs (Drs Andrew Bleasel and John Dunne currently) and also to the Asian Epilepsy Academy (ASEPA) (Dr Wendyl D’Souza). Other members have contributed to the educational program of ASEPA, notably Dr Simon Harvey and Prof Ernest Somerville. The Timor epilepsy project run by Professor Somerville has been limited in recent times as a result of change in local conditions. The ESA makes an important contribution to the regional teaching of EEG and Epileptology. The ASEPA courses for both regularly include Australian faculty. We have held the small group tutorial format EEG course developed in Australia in Cochin, India; Bangkok, Thailand; and Penang, Malaysia, incorporating local faculty with great feedback.

Educational Activities

The Annual Scientific Meeting was held in Brisbane in 2011 and Hobart in 2012. Both meetings were well attended with approximately 200 attendees at each of these three-day meetings. Invited keynote speakers were Prof Helen Cross – UK (2011), Prof Kevin Staley – USA (2012) and Prof Ennapadam Krishnamoorthy – India (2012). Each made marvelous contributions. These meetings featured presentations of the latest research regarding epilepsy from a number of Australian research centers. The annual EEG course conducted by the ESA for the Australian and New Zealand Association of Neurologists was held in both 2011 and 2012. Primarily attended by neurologists in training, the two-day course attracted both good attendance and feedback. For the first time in 2013, we have invited an overseas contributor Prof Greg Cascino, Mayo Clinic, USA, who in addition to local experts will enhance the course. Epilepsy Masterclass, a one-day meeting, is held annually with the target audience neurologists in training. Invited local experts and an interactive format ensured a high level of participation.

Activities in Conjunction with Local IBE Affiliate

Satellite meetings conducted by Joint Epilepsy Council of Australia (JECA) members (Epilepsy Queensland and Epilepsy Action Australia) were held with the Annual Scientific Meeting in Brisbane. Again a number of members of the ESA contributed to lectures and debates. At a state level smaller meetings of JECA meetings have also been supported. Currently both JECA and the ESA are fighting a government decision that would curtail the use of VNS.

Future Plans

The AGM November 2012 saw a new secretariat being appointed to the ESA: President Dr Dan McLaughlin, Vice-President Dr Cecilie Lander, Secretary Dr Kate Riney, Treasurer Dr Stephen Malone. The above activities are to continue annually with each requiring considerable organization to maintain the highest standard possible. An initiative to provide scholarships to neurologists within the Asian and Oceanic region for three-month attachments to epilepsy centers in Australia is being developed.

Officer Election Date

November 2012

Report By

Dr Dan McLaughlin

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AZERBAIJAN LEAGUE AGAINST EPILEPSY

Publications

  1. The Prevalence of Epilepsy in the Nakhichevan Autonomous Republic of Azerbaijan. Sharif I. Magalov, Nusrat F. Hasanov, Nargiz X. Azizova et al. CNS & Neurological Disorders – Drug Targets, 11. 2012, p.102-109.
  2. Neuroendocrine disorders of epilepsy in women. S.I. Mahalov, N.A. Guluzadeh, M.R. Guliyev, Sh.N. Mehdiyeva. Ukrainian Journal of Clinical and Laboratory Medicine 2012, Vol.7, no 1,p.158- 161.
  3. Gender relations of patients with epilepsy in Azerbaijan. Sh.I. Magalov, D.M. Khalilova. International Scientific-Practical Journal, Neurology and Neurosurgery in Belarus, 3 (11), 2011, p.136-140

Meeting

  1. Meeting devoted to the study of epilepsy in women.
  2. Meeting devoted to the study of the epidemiology of epilepsy in regions of Azerbaijan.

Summary of Activities in 2011 and 2012

Studied the epidemiology of epilepsy in the Sharur district of Nakhichevan Autonomous Republic (population 114,451) of Azerbaijan and in Ganja City (population 336,100) of Azerbaijan; including the quality of life of patients with epilepsy; and epilepsy in women in the population Azerbaijan

Educational Activities

The 3rd Caucasian Regional Summer School on Clinical Epileptology was held in Baku, 16-21 October, 2011

Future Plans

Continuation of study of epilepsy in women in Azerbaijan

Officer Election Date

June 2013

Report By

President, Sharif Magalov and Secretary-General, Shahla Melikova

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BELGIAN LEAGUE AGAINST EPILEPSY

Summary of Activities in 2011 and 2012

The Belgian League organized a national meeting on 18 June 2011 in La Hulpe. The main theme was Status Epilepticus. Prof Simon Shorvon gave the key lecture. The meeting was very successful. In addition to their usual information activities for patients and their families, both branches of the Belgian League had specific activities in 2011 and 2012. The “Ligue Francophone Belge contre l’épilepsie” had its Annual Meeting on 16 June 2012. Prof François Mauguière gave the key lecture about insular epilepsy. The members of the League had frequent meetings during the past two years to create an interactive e-learning program on epilepsy dedicated to physicians in training. Six modules are now available online. The “Vlaamse Liga Tegen Epilepsie” organized on 11 February 2012 for the fifth Day of Epilepsy in Vilvoorde. A four and a half-day course was organized in 2012 for continuous training of pediatricians and neurologists.

Future Plans

For 2013, campaigns in the media and manifestations around the European Epilepsy Day will be organized.

Report By

Patrick Van Bogaert

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CAMEROONIAN LEAGUE AGAINST EPILEPSY (CLAE)

Meeting

27 January 2011(Yaoundé) and 10 February 2011 (Douala), 3 March 2012 (Douala)

Summary of Activities in 2011 and 2012

27 January 2011: Meeting of the General Assembly of the CLAE in Yaoundé at the Cameroon National Medical Council. Included was the election of Dr Jacques Doumbe, neurologist at the Douala Laquintinie Hospital as 2nd Vice President of the League to replace the late Dr Ndo Belinga. Dr Victor Sini, neurologist at the Yaoundé Central Hospital was also elected as Vice Chair of the Scientific Committee. Admission of new members: Dr Faustin Yepnio Njonda (last year neurology training at Limoges, France), Dr Francis Nnanga (specialist in internal medicine with neurology as option, Military Hospital Yaoundé) and Dr Godwin Tatah (last year training in internal medicine with neurology as option, France), Dr Joseph Fondop (neurosurgeon, Douala Laquintinie Hospital). Set up of two discussion groups, one in Douala (Chair: Dr Doumbe Jacques) and the other in Yaoundé (Chair: Prof Njamnshi) for the organization and implementation of the 2011 Action Plan.

10 February 2011 and 13 March 2011: Meeting at Douala for the elaboration of the 2011 Action Plan. Many propositions were made and sent to the Executive for further discussion, adoption and implementation.

28 August - 1 September 2011: International Epilepsy Congress, Rome, Italy. General Assembly of the ILAE: final adoption of the candidature of Cameroon as a National Chapter of the ILAE. Our League was represented in this meeting by the President (Prof Elie Mbonda), the Secretary-General (Dr Callixte Kuate) and the Vice Chair of the Scientific Commission (Dr Victor Sini). Meeting of the ILAE Commission on African Affairs: The 2012 Action Plan of the African Commission was discussed and the budget adopted. Preparation of the 1st African Epilepsy Congress, Nairobi, Kenya

30 January to 2 February 2012, Marseille, France: Participation in the Congress of the French Society for Pediatric Neurology (Dr Séraphin Nguefack) 2 to 4 February 2012, Antebe, Uganda: participation in the International Congress on Pediatric Neurology (Prof Elie Mbonda)

3 March 2012, Douala, Cameroon: General Assembly of the CLAE

  1. Amendments of the constitution. An amendment was voted by 100 percent of 13 members present, on article six for the suppression of the mention “in charge of international relations” for the 1st Vice President and “in charge of national relations” for the 2nd Vice President.
  2. Admission of new members: New members have been admitted to the CLAE: Dr Kamdem Fokam Aimé (consultant neurologist, Bafoussam Regional Hospital), Dr Djouakep Noël consultant pediatrician, Douala Laquintinie Hospital), Dr Ndensi Jean Paul (consultant pediatrician, Bafoussam EEC Hospital).
  3. Adoption of the CLAE 2012 Action Plan. 5-6 December 2012: Sensitization campaign and consultation of 103 patients with epilepsy in three health centers in economic capital Douala: District Hospital of Nylon, Bonassama District Hospital and Hôpital Saint Albert Legrand of Bonaberi.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

15 September 2011: Dr Samuel Elong Ngono, Treasurer of the Cameroonian League has participated on a radio program on epilepsy in an international German radio Deutsche Welle. http://www.dwworld. de/dw/article/0,,6618001,00.html?maca=frapodcast_ sante-1858-xml-mrss

Educational Activities

May and June 2011: Activities in Mbam area, Centre Cameroon, under supervision of the Ministry of Public Health: sensitization campaign against epilepsy, recruitment of patients and organization of training session in the Mbam area

4 December 2012: Training session for 10 general practitioners at the District Hospital of Nylon. Subject for discussion was semiology of seizures (Dr Jacques Doumbe) and medical treatment of epilepsy (Dr Callixte Kuate) 4 December 2012: Training session for nurses and paramedics at the Bonassama District Hospital on Clinical diagnosis of seizures and treatment of Status Epilepticus (Dr Joseph Fondop) Activities in Conjunction with Local IBE Affiliate

5-6 December 2012: Sensitization campaign and distribution of more than one thousand prospectus on definition, clinical sign, etiologies of epilepsy, and care for people with epilepsy. Elaboration of prospectus and posters in collaboration with Sanofi-Aventis for sensitization campaign of the CLAE

Future Plans

  1. Choose a National Epilepsy Day.
  2. Organize a sensitization campaign in elementary and primary schools in Douala and Yaoundé
  3. Organization of a sensitization campaign in two national companies, and training of health personnel of these companies in the diagnosis and treatment of epilepsy.
  4. Organize the 1st Cameroonian Epilepsy Congress.

Officer Election Date

Probably end of year 2013

Report By

Dr Callixte Kuate Tegueu, Secretary-General

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CANADIAN LEAGUE AGAINST EPILEPSY

Publications

CLAE Connections

Meeting

October 2012, Calgary Alberta

Educational Activities

The CLAE Biennial Meeting was conducted in Calgary Alberta in October 2012. It was attended by 115 delegates from across Canada.

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EPILEPTOLOGY SOCIETY OF CHILE — CHILEAN CHAPTER ILAE

Publications

Chilean Journal of Epilepsy

Meeting

Meeting on 8-9 June

Summary of Activities in 2011 and 2012

2011 Continuing Education Workshops held the second Saturday of each month

  • 8 January: “Epilepsy and Language,” Labor income, FLGO. Marcelo Díaz
  • 12 March: “Neuroimaging in epilepsy.” Dr Cecilia Okuma. (New member) “Advances Study Group refractory epilepsy.” Dr Lucila Andrade
  • 9 April: “Psycholinguistics ITPA test skills and their relationship to learning school.” Working income, FLGO. Ana Maria Torres
  • 7 May: “Epilepsy and tuberous sclerosis, case report and review of the indications surgical.” Daniela Andrade and Dr Lucila Pennaroli
  • 10 – 11 June: XI Conference on Epilepsy (New syndromes new treatments)
  • 9 July: “Alternative epiléticas emergency, intravenous valproic acid.” Work entry. Dr. Carolina Gallegos. “Status not convulsive and non-convulsive seizures in the intensive care units and intermediate Carlos Van Buren Hospital.” Work income, Dr Andrea Aguirre
  • 13 August: “Mesial temporal epilepsy: can characterize network-mesial temporal Octal EEG limbic surface” Dr Cayetano Napolitano. “Electrocroticografía intraoperative cortical dysplasias.” Working admission, Dr Hernan Acevedo
  • 10 September: “Aspects electroclinical in addressing neonatal seizures.” Dr Daniela Pennaroli• 15 October: “Epilepsy and Seizures in the Elderly” Dr Dario Ramirez
  • 12 November: “Super Refractory Status: Clinical and electroencephalographic analysis of a case.” Dr Cayetano Napolitano
  • 14 December: Workshop #121 “Medial temporal Sclerosis in children: Clinical and Management” Dr Daniela Aguilera

This year is our sixth Colloquia in epilepsy. This continuing education activity takes place at the headquarters of the Society every Wednesday starting 5 October and ending on 30 November presented by Dr Perla David. The annual course is currently sponsored by the University of Chile and by Recalcine for snacks offered to attendees. The program was developed by neurologists and psychiatrists belonging to our Society. Topics posted contribute to improving general medical and neurology fellows. Evaluation as in previous years has been positive. Plans are to continue it, renewing and modifying themes facilitate attendance times.

XII Winter Days of Epilepsy 2012 took place 9-10 June 2012, in the Hotel Neruda. The XII Winter Days of Epilepsy was entitled “Psychiatry in Epilepsy”

3-6 October 2012, we hosted the XXX Congress of the Society of Psychiatry and Neurology for Children and Adolescents (SOPNIA) in the city of Puerto Varas

The Chilean Journal of Epilepsy is the official publication of the Society. Dr Perla David is editor. This year we are publishing the 10th volume of this journal. It will present original papers, case reports, review papers and updates. It is currently in application process and achieved Scielo sponsorship. The journal is also online on its own website www.revistachilenadeepilepsia.cl. We are happy to announce that Dr Ledia Troncoso, has joined the editorial board of the journal.

Our website, www.epilepsiadechile.com, is available to members and the general public. It has information on the Society as well as the following sections: 1) Directory; 2) Partners; 3) Congress (Epilepsy Winter Days); 4) References (citations epilepsy); 5) Publications (Revista Chilena de Epilepsy and Standards); 6) Photo Gallery; 7) Tribune to physician; 8) the patients Tribune; 9) Links to ILAE, IBE, WHO and MINSAL; and 10) Latin American Epilepsy Day. The website has played an important role for college students, the most frequent users, and for references and contact information in addition to the contribution to various patients through their families.

The Society maintains contacts with the Society of Neurology, Psychiatry and Neurosurgery, the Society of Psychiatry and Neurology for Children and Adolescents, the Chilean Society of Pediatrics and the Association of Leagues Against Epilepsy of Chile (ANLICHE). Society members have participated in the normative group Epilepsy, the Ministry of Health of Chile. Also, members of our organization participated in the XXVIII Annual Congress SOPNIA in Epilepsy Symposium, one of the best evaluated activities of Congress 2009. The symposium was coordinated by Dra Perla David with the participation of Drs Marcelo Devilat, Ledia Troncoso, Jorge Förster and Tomas Mesa as well as the members of Chilean Society Epilepsy and Anliliche And Sopnia Infant Chilean Consensus.

The Society is a member of the Committee on Latin American Affairs of the International League Against Epilepsy. We were involved in the organization of the V Latin American Epilepsy Congress which was held in Nairobi from 5-8 November. Dr Marcelo Devilat, attended as a delegate representing our Society. Society members were invited to present lectures and six exhibited posters with Chilean research.

On 9 September, American Day Celebration of Epilepsy was celebrated in Latin American Epilepsy. One of the events that celebrate this occasion is organized by the Chilean League Against Epilepsy which was attended by Perla David, MD, President of the Society, along with ministry officials and hosts. The day of 12 September, was the commemoration of the Latin American Epilepsy Day.

The year 2012 welcomed the following new members: Dr Juan Luis Moya (April) and Dr Cristiane Zulic (July).

The library, located at the headquarters of the Society, receives the magazine edition of Epilepsy and Epilepsy Chilean Journal, and other publications that are available to members.

We remind you that the Board is getting the background of the partners for the accreditation of Epileptology Society of Chile, according to their participation in activities of the Society, in books and scientific journals, international and electronic.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Latinamerican Epilepsy Day celebration

Educational Activities

  • Family social support
  • APADENE Latinamerican Epilepsy Day celebration
  • Pediatric Neurology Book 2012 Ed Mediterráneo Chilean Journal of Epilepsy 2011-2012 two volumes and Other Sleep Medicine.

Activities in Conjunction with Local IBE Affiliate

  • Latinamerican epilepsy day celebration
  • Pediatric Neurology Book 2012, Ed Mediterráneo Chilean Journal of Epilepsy 2011-2012, two volumes and Other Sleep Medicine

Future Plans

On 7 and 8 June 2013, there will be the XIII Winter Epilepsy, titled: “The Clinical and EEG as treatment guidelines.” The Organizing Committee invites you to engage stakeholders through original works, which can be sent to the website of the Society of Epileptology of Chile. Perla David, MD.

The Clinical Neurophysiology Society will have its X Conference on 10 November 2013 at the Davila Clinic Auditorium. The Society of Neurology, Psychiatry and Neurosurgery (SONEPSYN) will hold its Congress LXVII 1-4 December 2013, in the city of Valdivia.

Officer Election Date

2012

Report By

Perla David, MD

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CHINA ASSOCIATION AGAINST EPILEPSY (CAAE)

Publications

The Consensus on Using AEDs After Cranio-cerebral Operation (10th ECE)

Meeting

Meeting of standing members of CAAE Board, 11 February and 19 August 2012

Summary of Activities in 2011 and 2012

  1. Celebrating the 5th and 6th International Epilepsy Caring Day (IECD) 28 June, the theme is “Follow Guidelines, Say No to False Advertisements” and“Stand up for Epilepsy” respectively. The activities included public education activities in most provinces in China, voluntary diagnosis/treatment, multi-mass media publicity, etc.
  2. The 4th CAAE China International Epilepsy Forum (CIEF) was held in Nanjing, Jiangsu Province in September 2011; and the 3rd National Conference of EEG and Neurophysiology was held in Changsha, Hunan Province in May 2012.
  3. The ASEPA-ASNA EEG Certification Examination (Second round, Part I & II) was conducted. Results are generally satisfactory.
  4. A training course for EEG technicians via the Internet has been conducted successfully, 143 EEG technicians and doctors joined in.
  5. The provincial epilepsy associations increased to 14.
  6. A national survey on the organizations, personnel, working load and surgery of epilepsy in China was conducted in 2012.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Continuing implementation of the Project “Epilepsy Prevention and Control Management in Rural China” in 135 counties in 18 provinces, covering 75 million people. Currently 83,518 people with epilepsy (PWE) are under free treatment with phenobarbital and 8,695 with valproic acid. The funding from the central government to this project was 13 million CHY (2.1 US million) annually.

Educational Activities

  1. Six training courses in collaboration with ASEPA were conducted in China in 2011-12.
  2. A training course for EEG technicians via the Internet has been conducted successfully, 143 EEG technician and doctors joined in.
  3. Clinical Epileptology Summer School held annually.

Activities in Conjunction with Local IBE Affiliate

  • A special Committee of the CAAE concerning the IBE function, headed by Prof Hong Zhen, CAAE Vice president, has been set up to organize/coordinate patient activities
  • Two PWE Activity Centers were set up in Beijing and Shanghai, respectively.

Future Plans

  1. 5th CAAE China International Epilepsy Forum (CIEF) is planned for 12-15 September 2013 in Chongqing Municipality.
  2. A national examination of EEG technicians will be conducted in April 2013 in collaboration with the National Examination Center of the MOH.
  3. ASEPA-ASNA EEG Certification Examination (Part II) will be conducted in May 2013.
  4. Three ASEPA training courses will be held in 2013.
  5. Three official documents concerning the criteria of epilepsy centers, regulations for epilepsy surgery administration and operation are hopefully issued by MOH in 2013.

Officer Election Date

Fourth quarter 2014

Report By

Shichuo Li, President

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COSTA RICA CHAPTER

Summary of Activities in 2011 and 2012

Donation of computer equipment on behalf of Asociacion de Medicos de la Clinica Blibica to the EEG monitoring unit of San Juan de Dios hospital.

Educational Activities

To encourage neurology residents and young neurologist to participate in LASE, VIREPA and other medical education courses in epilepsy.

Future Plans

Building membership and adding integrated working groups for specific projects.

Report By

Rocio Quesada Roman, MD

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CROATIAN LEAGUE AGAINST EPILEPSY

Summary of Activities in 2011 and 2012

2011

  • Celebration of Purple Day (The Epilepsy Day in Croatia, 14 February) in the Kaptol Center– organized by UHC Sestre milosrdnice, Croatian Child Neurology Society and the City Hall
  • 9th EPNS Cavtat, Croatian Child Neurology Society, Cavtat-Dubrovnik, 11-14 May 2011
  • 40th Symposium of Croatian Child Neurology Society, Cavtat, May 2011
  • First International School Of Epilepsies And Movement Disorders, Dubrovnik, 12-16 May 2011
  • Department of Neurology, UH Dubrava Summer Camp for Children with epilepsy, held in Selce, 2011
  • Symposium of epilepsy, epileptic syndromes and EEG. Department of Pediatrics, UHC Split, 8-9 April 2011.

2012

  • Celebration of Purple Day (The Epilepsy Day in Croatia) 11 February 2012 in the Kaptol Center– organized by UHC Sestre milosrdnice, Croatian Child Neurology Society and the City Hall
  • Public lectures in the city of Zagreb, on 14 February, Kaptol 27, organized by UHC Sestre milosrdnice and the City Hall, title: “Contemporary epilepsy therapy”
  • “Epilepsy and encephalography” Course, Medical School Zagreb, Department of Neurology, UHC“Sestre milosrdnice” 16-27 April 2012
  • The 10th Croatian Symposium on Epilepsy with international participation, Croatian League Against Epilepsy, the city of Opatija, Croatia, 27- 30 June 2012, with the election of new leadership of CLAE
  • Adriatic Neurology Forum, Dubrovnik, organized by UH Dubrava, Department of Neurology, 29 March - 1 April 2012
  • Adriatic Summer Epilepsy School, International Epilepsy Teaching Course, under the auspices of University Hospital Zagreb and University Hospital Erlangen, June 2012, held on Island of Sipan, Dubrovnik, Croatia
  • “Controversies in neurology,” organized by the Department of Neurology, UHC Zagreb, Rebro, September 2012, held in Primosten, Croatia
  • Symposium of Croatian Child Neurology Society with international participation, The election of new President and the Board Members of Croatian Child Neurology Society, held in HLZ, Zagreb, 8 December 2012. The CLAE elected the following leaders for the next four years: President is Prof Davor Sporis; General Secretary is Romana Gjergja Juraski, PhD, MD; and Treasurer is Jelena Bosnjak. We would like to thank the former President, Danilo Hodoba, PhD,MD and former Secretary-General Prof Ljerka Cvitanovic-Sojat for their efforts and dedication to the CLAE during the previous eight years. The members of the CLAE have been actively participating in international Congresses and meetings in the field of epileptology and published in international scientific journals.

Future Plans

We have plans to further promote epilepsy awareness, to connect with local and international organizations dedicated to health promotion and education in the field of epileptology. We would like to increase the number of specialists, educated in the field of epileptology and educated EEG technicians.

Officer Election Date

December 2012

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THE CYPRUS CLINICAL NEUROPHYSIOLOGY SOCIETY

Summary of Activities in 2011 and 2012

  • 11 December 2012: The Cyprus Clinical Neurophysiology Society (CCNS) became a member of the IFCN
  • 12 December 2012: All potential members are informed of the above great event, at the moment numbering 25 in total, including both Greek and Turkish Cypriots
  • 14 December 2012: Interest is shown in the meeting“Horizons in Clinical Neurophysiology,” to be held in Oxford in 2013, as it is being regarded as a European Chapter meeting
  • 14 December 2012: The announcement in relation to the meeting “Horizons in Clinical Neurophysiology” is sent to all potential members of the CCNS
  • 18 December 2012: The profile of the CCNS is updated on the IFCN website
  • 27 December 2012: Holiday Greetings from the IFCN is sent to all potential members of the CCNS

Future Plans

A meeting of the CCNS Executive Committee will take place on 17 January 2013 to discuss future activities. This will include legalizing the CCNS within the Cyprus Republic, and ideas for educational activities within Cyprus.

Officer Election Date

12 July 2012

Report By

Eleftherios S. Papathanasiou, PhD

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ECUADORIAN LEAGUE AGAINST EPILEPSY

Publications

Poster and journal articles presented and published

Meeting

Near on July National Neurology and Epilepsy Congress to be held in Quito

Summary of Activities in 2011 and 2012

  1. Continuous Medical Education activities: Have done six courses online (two in 2011 and four in 2012) with 500 attendees. Activities supported by pharmaceutical industry and Universidad de las Américas – UDLA, Hospital Metropolitano and Neurovida Neurology Center.
  2. Successful organization of the VII LACE Quito 14– 17 November, near to 800 inscriptions.
  3. OPS/OMS Initiative: National Epilepsy Program presented to the MSP authorities. Waiting for scheduled meetings and initiate activities focused on Primary Care on Epilepsy and Continuous Medical Education.

Educational Activities

Continuous Medical Education activities: Have done six courses online (two in 2011 and four in 2012) with 500 attendees. Activities supported by pharmaceutical industry and Universidad de las Américas – UDLA, Metropolitan Hospital and Neurovida Future Plans Executing the National Epilepsy Program presented to the MSP authorities focused on Primary Care on Epilepsy and Continuous Medical Education

Officer Election Date

July 2013

Report By

Patricio Abad Herrera

THE FINNISH EPILEPSY SOCIETY

Summary of Activities in 2011 and 2012

The Annual Meetings were held 24 March 2011 and 23 March 2012, both in Kuopio. Altogether 48 new members were accepted in 2011 and 2012. Members of the Finnish Epilepsy Society participate in the program that prepares and updates the national treatment guidelines. The updated treatment guidelines for children and adults with epilepsy will be published in early 2013. The Finnish Epilepsy Society works in collaboration with the Finnish Epilepsy Research Foundation. Members of the Executive Board participate in, as well as nominate professionals to, the grant evaluation board. In 2012 the Finnish Epilepsy Society participated in the founding of the Finnish Brain Council together with eight different national patient organizations and ten national scientific organizations. The Finnish Brain Council is a national organization related to European Brain Council.

Educational Activities

Two different national educational meetings were arranged each year. Educational topics included epilepsy as part of life, diversity of epilepsy, acute seizures and Status Epilepticus, as well as diagnosis and differential diagnosis of epilepsy. Invited foreign speakers were Prof Simon Shorvon (University College London, UK), Prof Kristl Vonc (University of Ghent, Belgium) and Dr John Paul Leach (Southern General Hospital, Glasgow, UK). Lectures were targeted to variety of professionals who treat patients with epilepsy. There have been between 90 and 190 attendants in each national meeting. The latest national educational meeting in Helsinki, 22-23 November 2012 celebrated the 20-year anniversary of the Finnish Epilepsy Society. Additionally several regional educational meetings took place each year. These were arranged in coordination with the Finnish Epilepsy Society, different University / Central Hospitals and sponsors. Lectures were targeted to different professionals who treat people with epilepsy. Topics and speakers were individually chosen to fulfill local educational needs.

Activities in Conjunction with Local IBE Affiliate

The Finnish Epilepsy Society works closely with the Finnish Epilepsy Association. Educational activities or other meetings for both people with epilepsy and professionals are arranged together on a yearly basis. The Finnish Epilepsy Society and the Finnish Epilepsy Association also have common Internet pages (www.epilepsia.fi). Activities for the European Epilepsy day are arranged together each year. In 2011 professor Asla Pitkänen received the Ambassador for Epilepsy Award after a joint nomination by the Finnish Epilepsy Society and the Finnish Epilepsy Association. In 2011 the EU Written Declaration on Epilepsy was promoted together.

Future Plans

Two national educational meetings and several regional educational meetings will be arranged during the next year. Activities will be planned in close co-operation with the Finnish Epilepsy Association.

Report By

Dr Leena Jutila, Secretary General

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EPILEPSY SOCIETY OF GHANA

Summary of Activities in 2011 and 2012

  • The WHO in partnership with ILAE and IBE is supporting Ghana in a four-year Fight Against Epilepsy initiative. The goal of the initiative is to improve access to care and services for people with epilepsy. The specific objectives are:
    1. To develop and engage in the strategy for delivering epilepsy care
    2. To promote training of all professional healthcare providers, making them competent in diagnosing and treating epilepsy
    3. To improve awareness of community groups to decrease stigma and increase demand for epilepsy care
    4. To integrate provision of care and services for epilepsy within the primary healthcare system
    5. To monitor and evaluate the project and disseminate new ideas and knowledge
  • Continuing medical education for doctors, nurses
  • Media programs – national television morning show appearance on Stigma, First Aid and Living with Epilepsy, also on the Standpoint. A patient living with epilepsy was hosted with her husband and healthcare provider on the above.
  • National launch of Fight Against Epilepsy Ghana Initiative

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Fight Against Epilepsy Initiative WHO/Ghana Ministry of Health Initiative within WHO mhGAP framework. Partners: International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE)

Educational Activities

  • Continuing medical education for doctors, community psychiatric nurses and medical assistants on management of epilepsy
  • TV and radio appearances on Stigma, and First Aid
  • Public educational awareness creation and advocacy material printed and distributed.

Future Plans

The National Coordinating Committee (NCC) has planned the following activities and budget for January to December 2013 based on the objectives. The Fight Against Epilepsy Initiative for 2013 will add on more implementation sites; one district each from the Volta and Central Regions of Ghana, and an additional district from the Northern Region, conduct refresher trainings and strengthen monitoring and supervision activities

Officer Election Date

2014

Report By

Dr Albert Akpalu, Secretary

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GUATEMALA LEAGUE AGAINST EPILEPSY

Special Activities Year 2012

  1. First Session of the programming of the activities of the whole year 2012.
  2. Approval of the year 2012 Plan.
  3. First Scientific activity on basic and academia aspects of epilepsy.
  4. Organization of 15 subchapters of the Chapter Guatemala International League Against Epilepsy.
  5. General programming of the yearly activities of each subchapter of ILAE.
  6. Manufacturing of the educational materials for patients with epilepsy.
  7. Manufacturing of educational materials for patients and their families.
  8. Manufacturing of educational materials for school teachers and students.
  9. Creation of video materials for patients, relatives, teachers and general practitioners.
  10. Production of audio material for patient and physician education on epilepsy.
  11. Production of video material for the general public about epilepsy.
  12. Special planning for activities for elementary school teachers, materials about epilepsy.
  13. Inauguration in all the subchapters in Guatemala in different status or departments of specialized clinics for the attention of patients with epilepsy.
  14. Special training courses about epilepsy diagnosis and management of neurology residents in the areas of Pediatric Neurology, Adult Neurology and Clinical Neurophysiology, these activities with the support of State University of San Carlos de Guatemala.
  15. Monthly activities in the subchapters and in the headquarters of the League, scientific meetings with specialists in the neurological branches covering different aspects in the management, treatment and research in epilepsy.
  16. Monthly joint meeting with the neurological associations and epilepsy organizations with the support of the Continuum of the World Federation of Neurology, discussing epilepsy and other related topics of the neurological sciences.
  17. Monthly meeting of the Commission of Continuous Medical Education of the College of Physicians of Guatemala, presenting to all the organized medical community of Guatemala in topics of epilepsy management and guidelines in epilepsy for the physicians that are not neurologists.
  18. We participated in electronic teaching courses for physicians throughout the country via the Internet and through our web page. This was organized and presented through the web page: www.Neurologia para todos.com.
  19. Participate in courses given on our web page about epilepsy topics and increase awareness about the prevalence, incidence and importance of the correct management of the epilepsies.
  20. At monthly intervals, members of the League and the Bureau deliver lectures about epilepsy and related basic neuroscience topics in the subchapters spread all over the country of Guatemala.
  21. Active participation in research projects about social, academic and clinical aspects of epilepsy in different areas of interest.
  22. Participation in courses for neurological residents and other professionals interested in electrophysiology specially supporting knowledge in interpreting Electrodiagnostic tests in the field of the Neurosciences.
  23. Jointly with the Neurology and Neurophysiology Residency programs of the University of San Carlos participating in a joint effort for developing protocols for treatment and management of epilepsy.
  24. Direct participation through the neurology residency program and the university in educational courses on epilepsy at postgraduate and undergraduate levels at the University of San Carlos of Guatemala
  25. Our organizations are deeply involved in the development of the epilepsy surgery programs in Guatemala.
  26. Joint participation with the School of Psychology of The University of San Carlos in the development and support in the area of neuropsychology in epilepsy.
  27. Planning of the monthly activities about epilepsy for the general population that are not medical physicians.
  28. In the subchapter of Coban Alta Verapaz, 250 kms from Guatemala city, the local Committee, with the help of the city government and local organizations is involved in the construction of a multi-clinic facility with practical and modern facilities. It is expected to be a pioneer Project in Guatemala and Central America, and should be completed in 2013.
  29. With the Guatemala Red Cross we have an agreement of mutual cooperation for joint projects in the field of Epilepsy and Neurological diseases. The organizations involved are Chapter Guatemala ILAE, Chapter Guatemala and IBE, and neurology training program of the University of San Carlos of Guatemala. Among the present activities the League runs an epilepsy clinic in the headquarters of the Red Cross and the Neurology residency program provides a medical Neurology Resident. The Red Cross provides the facilities and modern equipment of Brain Mapping and EEG, and also supplies paramedical personnel.
  30. The Red Cross has this year purchased the first class equipment for Brain Mapping and EEG.
  31. A cooperation agreement has been signed between the Chapter Guatemala, International League Against Epilepsy, the International Bureau for Epilepsy, The Neurology-Clinical Neurophysiology Residency programs of the University of San Carlos, and the Guatemala Red Cross. The main objective is to pursue an integral concept of health: Health is not just the absence of disease but a complete sense of well being socially, medically and economically.
  32. Guatemala is a multilingual, multicultural society. Twenty-one languages are spoken in addition to the official language Spanish and less than half of the population read and write. A very innovative process was started with Dr Henry B Stokes who for the first time in the country made a set of audio CDs in 10 different languages with the help of local communities. This material is instrumental for teaching epilepsy to many rural communities in their own languages. A large number of CDs were produced and distributed with a special grant of U. S. $5,000 that was awarded by the IBE International Bureau for Epilepsy. A second phase of this process is being implemented for the near future. This is also a joint venture between IBE, and ILAE national Chapters.
  33. Meetings: Each year for the last 25 years the Chapter Guatemala of ILAE and the Chapter Guatemala IBE and the Guatemalan Association of Neurological Sciences organizes with its fellow Societies from Spain, the Iberocentroamerican Congreso of Neurological Sciences and Epilepsy with the participation of professionals from Central America, Latin America, USA, and Europe.
  34. Local organizations of the Subchapters all over the country are made up of: physicians, teachers, prominent members of the community, social workers, patients and relatives of patients. Monthly meetings are held.
  35. In the field of social epileptic projects, Guatemala is one of the five pilot countries that the Pan American Health Organization selected to develop a program of primary care in epilepsy and has had national and regional meetings implementing the programs in the Region.
  36. In Guatemala, the International Guidelines for the Manuals special written material distributed in the country including knowledge in epilepsy.
  37. The international program of Mental Health Gap with attention to epilepsy has been developed and implemented in most of the subchapters of ILAE of Guatemala.
  38. Together with the Mental Health Department of the Ministry of Health from Guatemala, programs for awareness on epilepsy are being done monthly.
  39. The Pan American Health Organization’s representative in Mental Health Diseases, Dr Rodriguez, has travelled several times to Guatemala to help develop the initiatives of reducing the GAP in the fight against epilepsy.
  40. The local Chapter of the League has helped develop two epilepsy surgery programs. One with special funds from the Congress of Guatemala, representing a joint effort between the League Guatemala and other organizations. The organization that handles this project is named HUMANA and is headed by Dr Juan Carlos Lara, Dr Jose Manuel Perez and Dr Jorge Leon. The other epilepsy surgery program is based in the main state Hospital of Guatemala: Hospital General San Juan De Dios.
  41. The International Congress on Chronic Neurological Diseases and Epilepsy took placed in Guatemala City in the 3rd week of August 2012 and had participants from Central America, South America and Europe.
  42. Neuropsychology continues to develop in the area of epilepsy with two private universities presenting neuropsychological works and five different publications in the form of thesis published in the fields of epilepsy and neuropychology.
  43. In the electronic media, three different web pages were created that have special publications on epilepsy and belong to our organizations in Guatemala: One is Neurologia para todos, the second is Neurociencias en Guatemala and Neurociencias in Guatemala.
  44. Our Chapter has published four electronic publications and books in epilepsy and provides for public consultation on the Internet.
  45. Our Chapter participated with posters and works in the recently finished Latin American Congress of Epilepsy held in Quito, Ecuador in 2012.

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HUNGARIAN EPILEPSY LEAGUE (HEL)

Publications

Official Guideline of Epilepsy Care, by V Juhos, K Hollody and J Janszky (eds.). 2010

Meetings

2011

  • HEL Section in frame of the XLV. Congress of Hungarian Clinical Neurophysiologic Society, 16-18 June, Miskolc
  • 28th Hungarian Epilepsy Workshop, 10-12 November, Győr

2012

  • 11th Biannual National Congress of HEL, 30 May-2 June, Kaposvár.
  • 29th Hungarian Epilepsy Workshop, 18-20 October, Győr.

Summary of Activities in 2011 and 2012

  • Election of Board: Jozef Janszky, President; Zoltan Szupera, Secretary General; Andras Fogarasi, President-elect; Judit Jerney, Past
    President
  • Reevaluation and care of personal HEL qualifications ‘Physician Trained in Epilepsy’ (PTE) and ‘Epilepsy Specialist’ (ESP).
  • In agreement with the Hungarian Association of Clinical Neurophysiology creation of a new HEL qualification “EEG license for PTE or ESP”
  • Edition of supporting material for evaluation of redt working ability for PWE
  • As a member of Owners Board participation in editing and publishing of Clinical Neuroscience / Ideggyógyászati Szemle (Ideggyogy Sz – IF/2011 0.488)
  • The HEL submitted the proposal on the revision to the sporting license in people with epilepsy, to the Hungarian Society of Sports Medicine.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  • Patronizing and supporting the European Epilepsy Day both years on 14 February
  • Publications for patients and their families about epilepsy
  • Stand Up for Epilepsy – two photos were exhibited in European Epilepsy Congress in London, of leading sport personalities with children living with epilepsy (HEL representative: Judit Jerney, Past President)
  • European Epilepsy Declaration – 75 percent of the Hungarian MEPs signed the Declaration (HEL representative: Judit Jerney, Past President).

Educational Activities

  • Teaching courses about modern diagnostic and therapeutic methods in epilepsy
  • The HEL announced application for Donath prize. The aim of the award is to inspire the scientific and educational activities of the young physicians, students, and medical specialists in the field of epilepsy.

Activities in Conjunction with Local IBE Affiliate

  • The Hungarian Association for the Future of People with Epilepsy has been a member of the IBE since 2007. HEL supported the activity of the organization in providing an umbrella function and coordinating the local Societies
  • Patronizing the European Epilepsy Day.

Future Plans

  • To continue the regular educational courses
  • To elaborate the new standards of the quality control, for epilepsy care in Hungary
  • To renew the homepage for the HEL.

Officer Election Date

2015

Report By

Jozef Janszky (President) and Zoltan Szuper, (Secretary-General)

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INDIAN EPILEPSY SOCIETY

Publications

Epilepsy India Newsletter Quarterly

Meeting

13th Joint Annual Conference of Indian Epilepsy Association Indian Epilepsy Society

Summary of Activities in 2011 and 2012

  • Annual Conference in March 2012
  • National Epilepsy Day Celebrated by various stateChapters, organized epilepsy camps in various states for epileptic patients and their caregivers
  • EEG Workshop August 2012
  • Epilepsy School December 2012 at Kochi, Kerala
  • Epilepsy School planned November 2013 at New Delhi
  • New Life members enrolled in 2012-2013 totaling 40.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

National Epilepsy Day Celebrated by various state Chapters. Organized epilepsy camps in various states for epileptic patients and their caregivers

Educational Activities

  • We organized 7th IES EEG Workshop, 11-12 August 2012 at New Delhi, India
  • Indian Academy of Neurology and Indian Epilepsy Society organized Epilepsy School in November 2012 at Kochi, Kerala India
  • We conducted the CMEs for young neurologist and epileptologist
  • We had sent a team of eight neurologists to attend Epilepsy Olympiad which was held during the 10th European Congress on Epileptology 2012 from 30 September to 4 October 2012 at London, UK.

Activities in Conjunction with Local IBE Affiliate

National Epilepsy Day celebrated by various state Chapters. Organized epilepsy camps in various states for epileptic patients and their caregivers. Camps comprised of public lectures, play, sports and painting, etc.

Future Plans

Indian Epilepsy Society is planning to organize Epilepsy School from 20-23 November 2013 in New Delhi

Officer Election Date

April 2010

Report By

Dr Man Mohan Mehndiratta, Secretary-General

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INDONESIA SOCIETY AGAINST EPILEPSY

Meetings

  • Denpasar, 4 November 2011
  • Jakarta, 3-4 December 2011
  • Jakarta, 28 January 2012
  • Jakarta, 3 March 2012Makassar, 9 November 2012.

Summary of Activities in 2011 and 2012

  • Five meetings
  • Twelve educational activities
  • Eight activities in conjunction with local IBE affiliate
  • Make draft curriculum of epilepsy consultant
  • Make a hospital-based research in epilepsy.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  • In conjunction with Ministry of Health, start a program for reduction of epilepsy treatment gap. Implemented in primary healthcare. October 2011
  • Start a hospital-based research project in epilepsy, now in progress.

Educational Activities

  1. Revise The Guideline of Epilepsy: 2011.
  2. Epilepsy Symposium in Conjunction with ASEPA Teaching Course, 11 June 2011 in Solo.
  3. EEG Workshop in Conjunction with ASEPA Teaching Course, 10 June 2011 in Solo.
  4. ASEPA Teaching Course, 12 June 2011 in Solo.
  5. Epilepsy symposium: Jakarta March 2012.
  6. Epilepsy: Symposium and workshop Malang, 28 April 2012.
  7. Epilepsy symposium for fasting PWE: Jakarta, July 2012.
  8. Epilepsy symposium: Yogyakarta August 2012.
  9. EEG workshop: Jakarta, October 2012.
  10. EEG workshop in Conjunction with ASEPA Teaching Course, 9 November 2012 in Makassar.
  11. ASEPA Teaching Course, 10 November 2012 in Makassar.
  12. Make draft curriculum of epilepsy consultant.

Activities in Conjunction with Local IBE Affiliate

  1. 1st media seminar held on 15 December 2011, Jakarta: “Mari Hapus Stigma Negatif Epilepsi” (Let’s vanish the negative stigma of Epilepsy).
  2. 2nd media seminar held on 21 March 2012, Jakarta: “Patuh pada Pengobatan Agar Epilepsi Terkontrol” (good compliance for good control of epilepsy).
  3. Purple Day: Gathering and epilepsy symposium for PWE and their family in Jakarta, Surabaya, Bandung, Semarang, Manad, March 2012.
  4. Epilepsy case finding: by medical students and teachers in rural area: Jombang, East Java: June 2012.
  5. 3rd media seminar (winner announcement) on 14 June 2012, Jakarta: ”Tatalaksana yang tepat sangat diperlukan untuk mengontrol serangan pada PWE” (Epilepsy Management).
  6. Epilepsy symposium for public, 3 November 2012 in Solo.
  7. CSP – Customer Support Program, Support PWE for a good compliance.
  8. Epilepsy symposium for fasting PWE: Jakarta, July 2012.

Future Plans

  • Revise Guideline of Epilepsy
  • Education of people, teachers, and police about epilepsy to increase epilepsy awareness
  • Education of Health Professionals about epilepsy, to increase management of epilepsy
  • Reducing treatment gap, in conjunction with Ministry of Health.

Officer Election Date

2015

Report By

Dr Kurnia Kusumastuti, dr., Sp.S(K), President

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IRAQI SOCIETY AGAINST EPILEPSY

Summary of Activities in 2011 and 2012

  1. One-day symposium held in conjunction with Al-Mustansyria Medical College and Al-Yarmook Teaching Hospital under the title of ‘Pitfalls in the Management of Epilepsy’ in 2012.
  2. Monthly meetings on the last Wednesday of each month with one or two lectures presented by Chapter members about epilepsy issues together with monthly administrative meetings.
  3. Ongoing work by Chapter members to establish the ‘Iraqi Guidelines in the Management of Epilepsy.’
  4. Active participation of Chapter members in the 2nd Iraqi Neuroscience Symposium in Al-Kufa University Medical College in 2011.
  5. Active participation in the ‘Baghdad Medical College Annual Conference’ in 2012.
  6. Active participation in the 3rd Iraqi Neuroscience Symposium 2013 at the Al-Kufa University College.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  1. Active participation in the ‘Fifth Epilepsy Symposium’ held in Paris in 2012.
  2. Participation in the ‘Stand up for Epilepsy Exhibition’ at the London Congress in 2012.
  3. Active participation in the ‘7th Epilepsy Symposium’ held in Beirut in 2013.

Educational Activities

  1. A number of lectures presented at different hospitals in Iraq by Chapter members about‘Seizure First Aid’ and epilepsy management.
  2. A number of TV meetings in the Iraqi space canal for public education.

Future plans

    1. One-day symposium about ‘WWE (Women With Epilepsy)’ to be held on March 2013 in conjunction with ‘Iraqi Society of Gynae.’
    2. Active participation in the ‘1st Conference for Iraqi Neurology Society in February 2013.
    3. The 2nd Conference for ‘The Iraqi Chapter Against Epilepsy’ in April 2013.

Officer Election Date

March 2015

Report By

Dr Ghaieb Bashar Aljandeel, Vice President

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IRISH EPILEPSY LEAGUE (IEL)

Meeting

4 November 2011 and 2 November 2012

Summary of Activities in 2011 and 2012

In 2011 the IEL began a membership drive to encourage all professionals working for patients with epilepsy in Ireland to join and get involved in the work of the IEL, locally, nationally and internationally. At the beginning of 2012 membership had risen by over 50 percent and continues to rise. The IEL made a decision to become more actively involved in professional activities which would assist people involved in the care of people with epilepsy to network and also enable the IEL to advocate for additional epilepsy resources. To help achieve this aim the IEL organized two very
successful Epilepsy Expert Days which show-cased the work and developments in epilepsy by professionals at national and international levels.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

The IEL actively supported Brainwave, The Irish Epilepsy Association, activities for European Epilepsy Days and other advocacy campaigns in 2011 and 2012.

Educational Activities

2011 – First Epilepsy Expert Day: The IEL organized this day in order to become more actively involved in professional activities, to aid in the networking of people involved in the care of people with epilepsy and related disorders, to provide a voice in international activities of the ILAE, to promote advocacy for epilepsy resources and to obtain research funding for epilepsy at national and European levels. There was a diverse range of Irish and UK speakers at this inaugural event including: “Epidemiology of the Epilepsies,” by Dr Christine Linehan, Director of the National Institute for Intellectual Disability, Trinity College Dublin; ”The Heart Brain Connection in Epilepsy,” by Dr Elijah Chaila, Consultant Neurologist, Midlands General Hospital; “New and Emerging MRI Techniques in the Evaluation of Epilepsy,” by Dr Fergus Rugg-Gunn, Consultant Neurologist, National Hospital for Neurology and Neurosurgery, London; “Use and abuse of EEG” by Dr Gerard Mullins, Consultant Neurophysiologist, Beaumont Hospital; “New Insights into the Aetiology of the Epilepsies,” by Dr Danny Costello, Consultant Neurologist, Cork University
Hospital; “What’s new in Pediatric Epilepsy?,” by Dr Sophie Varadkar, Consultant Pediatric Neurologist Great Ormond St Hospital for Children NHS Trust, London; “The Art of Tweaking in AED Combination Therapy,” by Prof Martin Brodie, Director, Epilepsy Unit, Western Infirmary, Glasgow, Scotland; “The future of epilepsy care in Ireland,” by Dr Colin Doherty, Consultant Neurologist, St James Hospital; and the day was closed by Mr Mike Glynn, CEO Brainwave and IBE President. The IEL organized this day in conjunction with UCB Pharma.

2012 – Second Epilepsy Expert Day: A goal of IEL President Prof Norman Delanty was to make the Epilepsy Expert Day an annual event. This ambition was realized when a second day was held in November 2012. This meeting was organized in conjunction with Eisai Europe Ltd. This annual Expert Day for epilepsy is now a focal point for increasing ILAE activity within Ireland. The day was chaired by the IEL President and speakers included: “Approach to the patient with new onset seizures,” by Dr Kevin Murphy, Consultant Neurologist, Sligo General Hospital; “Personalized Medicine: Using clinical factors to predict outcomes and inform driving,” by Prof Tony Marson, Professor of Neurology, Reader in Neurology University of Liverpool, Honorary Consultant Walton Centre; “VNS and other devices in epilepsy management,” by Prof Paul Boone, Professor of Neurology, Ghent University Hospital, Belgium; “Update on the National Epilepsy Care Program,” by Dr Colin Doherty, Consultant Neurologist, St James Hospital; “Epilepsy Genetics Research in Ireland,” by Dr Gianpiero Cavalleri, Biomedical Research, Royal College of Surgeons Ireland, Dublin; “Non-Epileptic attack disorder: An Epileptologists perspective,” by Dr John Paul Leach, Consultant Neurologist, Southern General Hospital, Glasgow; “Epilepsy in pregnancy What’s new?,” by Dr John Craig, Consultant Neurologist, Royal Victoria Hospital, Belfast; and concluded with Mr Mike Glynn, CEO Brainwave and IBE President who presented on the work of Brainwave and IBE developments in Europe.

Activities in Conjunction with Local IBE Affiliate

The IEL was delighted to showcase the IBE Jubilee Photographic Exhibition ‘Epilepsy Without Words’ at the 1st Epilepsy Expert Day, and would like to thank Brainwave, The Irish Epilepsy Association and IBE affiliate for their assistance in obtaining the exhibition. The IEL and Brainwave, local IBE affiliate, are both actively involved in the HSE National Epilepsy Clinical Care Program launched in May 2010, which has as a central tenet the creation of a new cohort of Epilepsy Nurse Specialists, trained to Advanced Nurse Practitioner level in a newly designed epilepsy masters course in the Royal College of Surgeons in Ireland. The main goal of this program is to change epilepsy care in Ireland with a model of care delivery, which will be underpinned by access to specialist nurses, improvements in quality, access and cost.

Future Plans

2013 – European Forum on Epilepsy Research IEL members will actively participate at the first European Forum on Epilepsy Research which will take place in the Convention Centre, Dublin from 25-27 May 2013 as part of the Irish Presidency of the European Union. The forum will have three definite goals 1) more focused research funding, to improve diagnosis and treatment; 2) Raise public awareness and reduce stigma associated with epilepsy and 3) Access to optimal standards of care across Europe, for people with epilepsy. This forum will bring together leading epilepsy researchers and policy makers to discuss a coordinated strategy for epilepsy research in Europe. For further details please visit the Conference website www.epilepsyresearcheurope.org

Report By

Professor Norman Delanty, President

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JAMAICAN LEAGUE AGAINST EPILEPSY (JLAE)

Summary of Activities in 2011 and 2012

During 2011 three main objectives were achieved.

  • The first was the creation of the teleconferencing facility at the University Hospital of the West Indies, funded locally in Jamaica and spearheaded by Prof. Ivor Crandon, Head of the Department of Surgery. The facility was launched with a link to Yale in July 2011
  • Much of the year was also spent working on funding and the logistics of holding the Third North American Regional Caribbean Congress on Epilepsy elsewhere than Jamaica where the first two Congresses were held
  • Dr Ali, President of the JLAE also worked closely with Profs Sam Wiebe, Nico Moshé and Peter Wolf in the development of a unique Constitution and Bylaws that would permit the unification of the islands and territories of the Caribbean in a common Society, the Epilepsy Society of the Caribbean (ESC). This would not have been possible without the prior approval by the ILAE that would permit the formation of such a multi-nation Chapter. The JLAE has, since its inception in 2001, had affiliate members from many of the other Caribbean islands. However the desire to have a fully inclusive society that would permit the regional harmonization of efforts to improve epilepsy care led to the conceptualization of the ESC. The Constitution and Bylaws were approved and announced in Antigua by Prof Emilio Perucca, then President-elect of the ILAE at the Third North American Regional Caribbean Congress on Epilepsy (Third NARCCE) held in February, 2012. This Congress, now with Category 1 CMEs, was well-attended and enthusiastically received. Faculty from North America and the Caribbean delivered high quality regionally relevant presentations. This Congress has cemented a place in the calendar of the Caribbean Region and is now a much anticipated biennial event. The fourth NARCCE will be held in St Lucia in 2014.

In 2012

  • The teleconference facility has been actively functioning, with alternate weekly teleconferences with the Yale epilepsy group. While epilepsy surgery itself has not yet begun in Jamaica the regular teleconference meetings has catalyzed the creation of an Annual Course on Epilepsy at the University of the West Indies in Jamaica, a series of 16 lectures covering the subject from a multidisciplinary perspective. This Conference has been freely open to all interested students, residents and attendings and is generating significant interest in the field among students. Also, in July 2012, Drs Tammy Haynes-Robinson, neuropsychologist and Dr Geoffrey Liburd, neurosurgeon, travelled to Yale University for a year of specialized training that, on their return to Jamaica, the epilepsy surgery program can begin in earnest. The JLAE remains extremely grateful to the North American Commission for its support of this initiative as well as to Yale and Dr Dennis Spencer in particular for all his personal efforts to support the development of this surgical program in Jamaica
  • As this report is being written, the votes for the elected Executive members of the Council of the ESC have just been tallied. The Executive will be in office for two years. The president will not be eligible for re-election but will serve an additional term as Immediate Past-President. We are looking forward to immediately forming active subcommittees to continue the work started by the JLAE on important areas of future emphasis such as regional research, educational initiatives and the development of the surgical program
  • An important subcommittee we will form is one to promote the rights of people with epilepsy to be legally able to hold a driver’s license once seizurefree, a right they currently are denied all across the English-speaking Caribbean
  • We are also greatly looking forward to the Epilepsy Society of the Caribbean becoming an active member of the North American Region of the ILAE, as the JLAE has been
  • Finally, this is the final report that will be written on behalf of the JLAE which has as of today been absorbed into this larger regional Society. The JLAE was formed only 11 years ago but we believe did achieve the important objective of raising awareness of the needs of people with epilepsy in the Caribbean and, by working closely with our North American colleagues, particularly through the North American Commission, helped to raise standards of diagnosis and treatment across Jamaica and the Caribbean Region during its relatively short existence.

Activities in Conjunction with Local IBE Affiliate

Annual Fun Run to raise funds for epilepsy care; held in Kingston, Jamaica in December 2012.

Future Plans

The JLAE as of today has been absorbed into the regional Epilepsy Society of the Caribbean.

Report By

Amza Ali, President JLAE

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JAPAN EPILEPSY SOCIETY (JES)

Summary of Activities in 2011 and 2012

  1. The first joint symposium organized by JES and Japanese Association for Acute Medicine (JAAM) was held at the 40th Annual Meeting of Japanese Association for Acute Medicine (JAAM). The necessity of multidisciplinary epilepsy care, especially for adult epilepsy, is gaining recognition. The issues of treatment for patients with childhood onset epilepsy who reach adulthood (awareness of the status of carry-over care) are being highlighted.
  2. The number of JES members continues to increase. As of 10 January 2013, membership has further increased to 2,448, with more pediatricians, neurosurgeons and neurologists joining JES.
  3. Including the 42 epileptologists who passed the certification examination in 2012, a total of 437 clinical epileptologists certified by the JES are now practicing. With the need to address the increase in elderly onset epilepsy, the current number of specialists is totally inadequate. Further measures to increase the number of certified epileptologists have to be considered.
  4. The 46th Annual Conference of the JES was held 10-11 October 2012 in Tokyo under the leadership of the chair Prof Masato Matsuura. Over 1,200 participants attended the meeting, who actively discussed and shared views. The number of attendees exceeded 1,200 for the second time in the history of the JES Annual Conference. The Conference was witness to the continued increase in interest on epilepsy care in recent years.
  5. The JES Sponsored Award continues to be active, with nine young JES members awarded study tours to North America and other Regions. The JES Scholarship also continues to accept young researchers in the Asian Oceanian region to study in Japan.
  6. To prevent traffic accidents related to epileptic seizures, the Legislative Affairs Committee of JES is engaged in survey and preventive activities in collaboration with the National Police Agency and other related bodies.
  7. The JES in collaboration with the Japan Medical Association is constructing an epilepsy care network that transcends the boundaries of medical disciplines and regions. During the 12 months starting from April 2012, approximately 40 courses on epilepsy are to be held all over Japan.

Report By

Masako Watanabe

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JORDANIAN CHAPTER OF EPILEPSY

Meetings

Four meetings

Summary of Activities in 2011 and 2012

We have done four meetings in 2012. They were successful and interactive. Most of the audience were doctors of different specialties and students of the medical school of Hashimet University. We also arranged three lectures on the subjects of treatment update, difficult cases in epilepsy and when to start antiepileptic treatment. These three lectures were done by Dr Mohammed Shehab.

Educational Activities

Lectures for medical students of Hashimate University

Future Plans

We are planning to arrange a symposium on 28 February to 1 March 2013 in the Kempinski Hotel in the Dead Sea and we have the pleasure to invite you to this activity which will be regional.

Officer Election Date

By the end of 2013

Report By

Dr Mohammed Shehab

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KOREAN EPILEPSY SOCIETY

Publications

Journal of Epilepsy

Summary of Activities in 2011 and 2012

  1. Korean Epilepsy Congress 2012, 7-9 June 2012 in SongDo Convensia, Incheon, Korea.
  2. Proclamation of Epilepsy 2012, 7 June 2012 in Deoksu-gung, Seoul, Korea.
  3. Press conference for Epilepsy 2012, 7 June 2012 in Plaza Hotel, Seoul, Korea.
  4. Epilepsy PR forums 22 March 2012 in Severance Hospital, Seoul, Korea.
  5. Epilepsy promotional activities 10-15 December 2012 Five Korean Newspapers.
  6. Policy Conference for people with epilepsy.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  1. Meeting AOEC in Manila.
  2. International sports star and epilepsy patients with Taking Pictures.

Educational Activities

  1. Supplement Education 2012, 24 November 2012 in Seoul Asian Hospital, Korea.
  2. Education for Epilepsy to teachers and civil servants.
  3. Opened EEG test.

Activities in Conjunction with Local IBE Affiliate

  1. Proclamation of Epilepsy 2012, 7 June 2012 in Deoksu-gung Seoul, Korea.

Future Plans

  1. Korean Epilepsy Congress 2013, 13-15 June 2013 in Grand Hotel, Seoul, Korea.
  2. Korean Bureau for Epilepsy (KBE), expected to start.
  3. Supplement Education 2012, 2 November 2013 in Severance Hospital, Seoul, Korea.

Officer Election Date

19 March 2013

Report By

Hoon-Chul Kang

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ASSOCIATION AGAINST EPILEPSY OF KOSOVO

Meeting

Several professional meetings related to epilepsy with the local members

Summary of Activities in 2011 and 2012

The Association Against Epilepsy of Kosovo was created in 2010. In 2011 it became a full member of the International League Against Epilepsy (ILAE). Membership in ILAE was a special moment for the Association and a big encouragement to intensify its activities. After membership in ILAE, the Association’s leadership held a series of meetings where an action plan for the year 2011 and 2012 was created. Firstly, the Association’s board created a working group to design a logo for the Association, as well as to draft the frame of the Association’s website. Both of these activities were carried out successfully and today the League Against Epilepsy of Kosovo has its logo, and website, which is expected to be launched in February.

During the year 2011 and 2012, the Association Against Epilepsy of Kosovo has organized a total of six professional meetings with its members, three meetings each year. These meetings had educational purposes for the members of the Association. For the purpose of awareness raising, education and increasing knowledge about epilepsy, during the year 2011 and 2012, the League Against Epilepsy of Kosovo held two meetings with patients with epilepsy and members of their families (one meeting per year). During 2011 and 2012, four radio programs were broadcast from the national radio station, where topics related to epilepsy issues were discussed. These radio programs were broadcast with the purpose to raise awareness among the general population about epilepsy and the challenges it brings. The lack of a meaningful data base of patients with epilepsy in the Republic of Kosovo has pushed us, as an Association, to establish a partnership with the Ministry of Health. Several meetings were held with officials of the Ministry of Health where we discussed several modalities related to the creation of a data base of people with epilepsy in Kosovo.

Educational Activities

The Association Against Epilepsy of Kosovo has organized several educational activities. Target groups for these activities have been professionals who deal with epilepsy and its treatment, patients with epilepsy, their families, officials of various institutions, policy makers in the field of health as well as the general population. Below we present educational activities organized by year:

2011

  • Organization of three professional meetings with members of the Association Against Epilepsy of Kosovo. Topics of discussion at these meetings were:
    • Epilepsy and pregnancy
    • Complications of antiepileptic therapy
    • Stroke and epileptic seizures.

The purpose of these meetings was to increase the knowledge of medical professionals who deal with the diagnosis and treatment of epilepsy, share new principles of epilepsy treatment during pregnancy, possible complications and side effects of antiepileptic medications as well as information on the occurrence of epilepsy after stroke and its treatment.

  • Organization of a meeting with patients with epilepsy and their family members The purpose of this meeting was information and awareness raising and delivery of basic knowledge to patients with epilepsy and their families about what epilepsy is, how it is diagnosed, possible treatments, first aid in the event of an epileptic seizure, as well as general information on living with epilepsy.
  • Two radio programs were broadcast on the national radio station (one per year). These 45-minute programs were broadcast live with the intention to grab the attention of the listeners and give them the opportunity to ask question and interact on the topic of epilepsy. The main purpose of these programs was to raise the knowledge and awareness of the general population on epilepsy, challenges that it can bring, the stigmatization of people with epilepsy, their rights, and the difference of epilepsy from mental illness.

2012

  • Organization of three professional meetings with the members of the Association Against Epilepsy of Kosovo. Topics of discussions at these meetings were:
    • Novel epilepsy therapies
    • Rational polytherapy with antiepileptic drugs
    • Multiple sclerosis and epilepsy.

The purpose of these meetings was to increase the knowledge of medical professionals who deal with the diagnosis and treatment of epilepsy, to get familiar with new antiepileptic medicines and the advantages and disadvantages of novel antiepileptic medications compared to antiepileptic medications of older generation, as well as the latest news on handling epilepsy. In the second meeting, the importance of rational polytherapy and finding and combining of antiepileptic medications which have favorable characteristics and challenges in finding optimal combinations was discussed. In the third meeting, epilepsy seizures in multiple sclerosis patients was discussed. In this meeting, a scientific study carried out by a group of neurologists of Neurology Clinic at the Clinical University Centre of Kosovo in Pristine, was presented.

  • Organization of a meeting with patients with epilepsy and their family members. The purpose of this meeting was information, raising awareness and delivery of basic knowledge to patients with epilepsy and their families about what epilepsy is, how it is diagnosed, possible treatments, first aid to be given in the event of an epileptic seizure, as well as life with epilepsy.
  • Two radio programs were broadcast on national radio (one per year). These 45-minute programs were broadcast live with the possibility of receiving questions from listeners. The purpose of these programs was to raise the knowledge and awareness of the general population on epilepsy, challenges that it can bring, the tigmatization of people with epilepsy, their rights, and the difference of epilepsy from mental illness.

Future Plans

  • Launching of Association’s website
  • Organization of activities for European epilepsy Day (11 February 2013)
  • Marking of Purple Day
  • Three professional meetings
  • Creation of a database of people with epilepsy
  • Organize an educational campaign for high school students
  • Continue public awareness-raising by utilizing mass media
  • Enhance our educational activities by starting to prepare for running an epilepsy course and/or organizing a symposium.

Officer Election Date

2011

Report By

Valbona Govori, President

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KUWAIT LEAGUE AGAINST EPILEPSY

Meeting

8th GCC Neurology Conference, 16-17 November 2012

Summary of Activities in 2011 and 2012

  • The Chapter was formed in March 2013
  • Purple Day 2011
  • Purple Day 2012
  • Seminars on “Epilepsy, Beyond medical therapy”
  • 9 June 2012, Multiple TV and Radio interviews on epilepsy for public awareness.

Educational Activities

  • Multiple single talks to medical practitioners and trainees on epilepsy
  • Seminars on “Epilepsy, Beyond medical therapy”
  • 9 June 2012, Educational poster prints on AEDs.

Future Plans

EEG workshop, epilepsy management seminars, Purple Day 2013

Officer Election Date

5 March 2011

Report By

Abdulaziz Ashkanani

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MALAYSIAN SOCIETY OF NEUROSCIENCES (EPILEPSY COUNCIL OF MALAYSIA)

Meetings

  • A total of three meetings were held: 8 March 2011; 28 May 2011; and 1 November 2012
  • Annual AGM held in May 2011 during Malaysian Society of Neurology (MSN) AGM and all three existing office bearers will continue for another term (2012- 2013)
  • Next annual AGM will be held in June 2013 during MSN AGM

Objectives

  1. To promote education and training of health professionals in the care of epilepsy patients.
  2. To promote research in epilepsy.
  3. To continue to improve care in epilepsy management.

Summary of Activities

  1. Epilepsy Awareness Campaign: The school epilepsy program hit a snag when the personnel in the Ministry of Education changed portfolio. No campaign was carried out in 2011 although the Epilepsy Council of Malaysia (ECM) has received partial funding from the Neuroscience Foundation in December 2009 and December 2010. The council decided to put the campaign on hold until after the national general election. Dr Datuk Raihanah was interviewed on epilepsy by Metro Harian, which was organized by Pantai Hospital.
  2. Consensus Guidelines on Epilepsy:The council launched the updated Epilepsy Consensus Guidelines 2010 during the MSN Annual Scientific meeting 2010 in Kota Kinabalu. The electronic copy of the guideline is available on the MSN website.
  3. Research in Epilepsy: Although no new research was conducted, the ECM received a research grant of RM20,000.00 from Novartis Corp (M) Sdn Bhd to conduct research for HLA-B*1502 testing. The ECM called for research proposals for cross-validation studies from five institutions throughout Malaysia that were capable of performing the test in-house. The ECM received proposals from two institutions (UKMMC and UITM) and a letter from the Institute of Medical Research (IMR) containing a counter suggestion to this research initiative. As there was no further response from UITM requesting ethics approval of research proposals, the council decided to allocate all the research funding to UKMMC. The test kit is still in progress and is expected to be ready for commercialization by 2013.
  4. Educational Activities: A series of workshop and lectures were conducted by ECM members to other healthcare professionals throughout 2012.

By Prof Dr Dato’ Raymond Azman Ali:

  1. Delivered a lecture entitled “Management of epilepsy in Malaysia” at the GSK round table discussion with Prof Patrick Kwan on Epilepsy Disease Burden and Treatment Option, Hilton Hotel, Kuala Lumpur, 25 February 2012.
  2. Delivered four lectures to Year 2 medical students at Universiti Sultan Zainal Abidin, Kuala Terengganu, 17 May 2012 entitled “Cranial nerve disorders,” “Differential diagnosis of blackouts,” “Clinical approach to epilepsy” and “Diagnostic approach to weakness.”
  3. Delivered a lecture entitled “Psychogenic Non- Epileptic Seizures” at the 8th Kuala Lumpur Mental Health Conference, organized by the Badan Kebajikan Psikiatri, Putra World Trade Centre, Kuala Lumpur, 4 July 2012.
  4. Delivered a lecture entitled “Differential Diagnosis of Blackouts” at Neuroscience 2012, the 23rd Annual Scientific Meeting of the Malaysian Society of Neurosciences, Pullman Hotel, 8 July 2012.
  5. Delivered a lecture entitled “Approach to Fits, Faints and Funny Turns” at the Penang Neurology Update, Penang Hospital, 13 July 2012.
  6. Delivered a plenary lecture (as Tokoh Penyelidik) entitled “The Molecular Basis of Epilepsy” at the 14th Research Week of the Health Sciences, UKM, 16 July 2012.
  7. Delivered a lecture entitled “Semiology of spells and seizures” at the Johor Neurology Update, Monash University Clinical Campus, Johor Bahru, 13 October 2012.
  8. Delivered a lecture entitled “Semiology of Generalized Seizures” at the Asian Epilepsy Academy (ASEPA) Teaching Course in “Classification, Semiology and Differential Diagnoses of Seizures and Epilepsies,” Makassar, Indonesia, 11 November 2012.
  9. Delivered a lecture entitled “Other Differential Diagnoses of Seizures and Epilepsies” at the Asian Epilepsy Academy (ASEPA) Teaching ourse in “Classification, Semiology and Differential Diagnoses of Seizures and Epilepsies,” Makassar, Indonesia, 11 November 2012.

By Assoc Prof Dr Tan Hui Jan:

  1. Neuro Update: Epilepsy and Status Epilepticus. Academy of Medicine, 21 April 2012.
  2. East Coast Neurology Update. 24 May 2012, Hotel Permai, Kuala Terengganu.
  3. EEG monitoring in localization. 6-8 July 2012 MSN Pullman Putrajaya.
  4. Seizures and CNS infection. 6-8 July 2012, MSN Pullman Putrajaya.

By Dr Datuk Raihanah Abdul Khalid:

  1. Delivered a lecture entitled “Seizures – When the drugs don’t work” at GP & Physician workshop, Grand Dorsett Hotel, Subang Jaya, in October 2012.
  2. A talk on epilepsy as part of lecture series for Post- Graduate Nurses’ program in critical care and another one on Status Epilepticus, at the Tun Tan Cheng Lock College of Nursing, PJ throughout September – October 2012.
  3. Epilepsy awareness talk to Parents-Teachers Association at Sekolah Sungai Dua, Penang, June 2012.

By Assoc Prof Dr Wong Sau Wei:

Delivered a lecture entitled “Benign Epilepsies in Childhood” at East Coast Neurology Update, 24 May 2012, Hotel Permai, Kuala Trengganu

By Dr Ahmad Rithauddin:

  1. Delivered a lecture entitled “Update on Treatment of Intractable Epilepsies” An Update of Pediatric Neurology 2012, 23-25 September, 2012, Auditorium, Kota Bahru Nursing College, Kota Bahru.
  2. Delivered a lecture entitled “Common Pediatric Epilepsy Syndromes” Pharmacy Practice Scientific Conference, 23 March 2012, Hotel Istana, Kuala Lumpur.
  3. Delivered a lecture entitled “Fits, Faints and Funny Turn.” Pediatric Workshop for GPs organized by UBM Medica, 1 July 2012, Hotel Saujana, Subang Jaya.
  4. Delivered a lecture entitled “EEG Monitoring in Children,” at the 23rd MSN Annual Congress, 6 July 2012, Hotel Pullman, Putrajaya.

Report By

Loh Hui Pin and Prof Dato’ Dr. Raymond Azman Ali

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EPILEPSY SOCIETY OF MALTA

Summary of Activities in 2011 and 2012

In 2011 and 2012 the Epilepsy Society of Malta worked closely with the IBE member association, the Caritas Malta Epilepsy Association, to raise more public awareness about epilepsy in Malta including talks, media appearances and conferences. The new Neuroscience Department at the main teaching hospital also began more teaching activities for young medical graduates and graduate trainees which included discussion of epilepsy cases.

Educational Activities

The Epilepsy Society of Malta and the Caritas Malta Epilepsy Association participated in in-service training for educators and teachers in Malta in conjunction with the Ministry of Education. A national conference was also held on raising awareness among employers about epilepsy.

Activities in Conjunction with Local IBE Affiliate European Epilepsy Day activities were held on the University of Malta campus in conjunction with the Malta medical students, Malta pharmaceutical students and Malta Dental students associations.

Future Plans

More training sessions on epilepsy surgery for young medical trainees are planned.

Officer Election Date

2012

Report By

Janet Mifsud, Secretary

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MEXICAN LEAGUE AGAINST EPILEPSY (CAMELICE)

Publications

Books:

  1. Epilepsia. Rubio-Donnadieu F, Alonso-Vanegas M, Reséndiz-Aparicio JC, Sentíes-Madrid H 2011.
  2. Epilepsia un enfoque actual. Sentíes-Madrid H. Ed. Alfil. 2012.

Meetings

  1. XXXIV Annual Meeting Oaxaca 2011.
  2. Neurociencies in epilepsy meeting. April 2012.
  3. XXXV Annual Meeting, Durango. September 2012. (965 participants).

Summary of Activities in 2011 and 2012

  1. PAHO activities.
  2. Participation in the International Affairs Committee of the American Epilepsy Society.
  3. Participation in the Task Force in ILAE Epilepsy Guidelines.
  4. CAMELICE website.
  5. Participation in AES PECA program (posters presentation in AES Annual Meeting 2011 and 2012), European Epilepsy Meeting 2012 and
    Latinoamerican Epilepsy meeting.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  1. Promotion of Global Campaign in the CAMELICE website.
  2. PAHO activities.

Educational activities

  1. XXXIV Annual Meeting Oaxaca 2011.
  2. Neurociencies in epilepsy meeting. April 2012.
  3. XXXV Annual Meeting, Durango. September 2012. (965 participants, 13 international professors).

Future Plans

  1. Epilepsy information Book for patients and caregivers.
  2. XXXVI Annual Meeting in Veracruz, September 2013.

Officer Election Date

17 September 2012

Report By

Horacio Senties Madrid MD, President

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MONGOLIAN EPILEPSY SOCIETY (MES)

Publications

  1. Purevsuren T, Tovuudorj A, “The study of some causes, risk factors and Clinical findings of children with epileptic syndrome” Korean Epilepsy Congress, 2012. pp172.
  2. Khandmaa D Tovuudorj A “Knowledge, attitudes towards epilepsy among healthcare professionals” Korean Epilepsy Congress, 2012. pp 208.

Meetings

“Epilepsy Colloquium in 2012” in Ulaanbaatar.

“The 1st International Epilepsy Symposium” in Ulaanbaatar in 2012.

Summary of Activities in 2011 and 2012

The First International Epilepsy Symposium was organized 21-22 of September, 2012, in Ulaanbaatar. The first day event was held in the Blue Sky Hotel and Tower and the second day event was held in Jargalant complex. In the symposium the renowned scientists and professors from the CAOA and ASEPA participated and delivered lectures about modern conceptions of diagnosis and treatment of Epilepsy.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

We consider that organizing the 1st International Epilepsy Symposium was very significant to improve collaboration and to advance relations between the World Health Organization (WHO), the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and Mongolian Epilepsy Society (MES). The symposium was a part of the activity of the Global Campaign against Epilepsy “Out of the Shadows” which is jointly organized by WHO, ILAE, and IBE.

Educational Activities

Prof H Stefan (from Erlangen Epilepsy Center, Germany) visited Mongolia in 2011 and delivered a lecture about modern conceptions of diagnosis and treatment of epilepsy.

Activities in Conjunction with Local IBE Affiliate

We have been actively cooperating with IBE and organized the series of “Quality of Life” trainings in rural areas and cities.

Future Plans

We propose to implement the National Program on the Improvement of Epilepsy Care and Overcoming the Treatment Gap in Mongolia. This program, upon adoption by Mongolian government, shall be implemented stage by stage, depending on the availability of funding. The important milestone for success of this program shall be to establish the third level epilepsy center in UB with all related facilities in accordance with international requirements.

Officer Election Date

2014

Report By

Tovuudorj, Secretary-General

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NEPAL EPILEPSY SOCIETY

Meetings

Three meetings from April to December

Summary of Activities in 2011 and 2012

  1. Health camp: Bhaktapur, Katunje, examined over 100 patients, 15 December 2012.
  2. Participation and lecture by President Dr Rabindra Shrestha: Analysis of Patients with Fainting Attack and Psychogenic Nonepileptic Seizure in a Tertiary Hospital.
  3. One-day Conference on Epilepsy: Hotel Annapurna (sun): 24 August 2012.
  4. Election of new board: April 2012.

Educational Activities

Participation and lecture by President Dr Rabindra Shrestha: Analysis of Patients with Fainting Attack and Psychogenic Nonepileptic Seizure in a Tertiary Hospital One-day conference on Epilepsy: Hotel Annapurna: 24 August 2012

Activities in Conjunction with Local IBE Affiliate

Health camps in collaboration with Nepal Epilepsy Bureau by February 2013

Future Plans

Development of Epilepsy Guidelines for the country by the end of June

Health camps: two more by June

Health camps in collaboration with Nepal Epilepsy Bureau

Officer Election Date

New election completed April 2012

Report By

Dr Rabindra Shrestha

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DUTCH LEAGUE AGAINST EPILEPSY (NETHERLANDS)

Publications

Annual Report

Meetings

Three to four meetings each year

Summary of Activities in 2011 and 2012

The Dutch League became the Epilepsy Task Force of the Dutch Neurology Association. There is an intense cooperation with the Dutch epilepsy patient organization and the National Epilepsy Federation. The vagal nerve stimulation group was integrated within the League.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Introduction of a website www.epilepsieliga.nl

Educational Activities

Organization of a National Epilepsy Symposium each year

Activities in Conjunction with Local IBE Affiliate

An app for epilepsy was introduced.

Future Plans

More attention for driving regulations for people with epilepsy, in agreement with European regulations

Report By

G Hageman, Neurologist, Secretary

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NICARAGUAN CHAPTER (CANILICE)

Publications

Ninguna

Summary of Activities in 2011 and 2012

Two seminars, each year, for primary care physicians, to provide the basic tools for diagnosing and treating patients with epilepsy, with emphasis on rural and suburban areas. American Congress of Neurology, which included modules in pediatric epilepsy, drug resistant epilepsy and epilepsy and special conditions.

Educational Activities

Seminar for primary care physicians entitled “Basic Epilepsy: diagnosis, management and treatment,” which took place in February and August 2012

Activities in Conjunction with Local IBE Affiliate

No Chapter of IBE

Future Plans

We are working with a group of civil societies, with the intention of organizing a foundation to ensure medications get to patients with epilepsy and to introduce laws to protect the rights of patients with epilepsy. We are currently drafting statutes and regulations to introduce to the appropriate authorities.

Officer Election Date

Pending

Report By

Foad Hassan

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NIGERIA LEAGUE AGAINST EPILEPSY

Meeting

Nigeria Epilepsy Congress

Summary of Activities in 2011 and 2012

Nigeria is a Federation of 36 states with a federal capital territory, Abuja. As of 2010, there were over 35,000 doctors, 27 colleges of medicine and 75 tertiary and secondary medical institutions licensed to train medical house officers. The total number of consultant neurologist/physicians is 100-150 and there may be the same number of psychiatrists. The number of neurosurgeons may be 50-100. All neurologists (pediatric and adult neurologists are trained to care for epilepsy patients as part of the training curriculum). Trained epileptologists are few, however some are in training. Our Chapter began in 2007 with an application made by the current president
Dr IO Onwuekwe requesting permission to start a Nigeria Chapter. The Chapter was granted full membership in ILAE in 2011. We are one of the founding Chapters of the African Commission.

We participated in IEC Rome 2011 and in the first African Epilepsy Congress in Nairobi in 2012.

From the onset we adopted a five-point agenda coded RAATE (Research, Advocacy, Awareness Creation, Training, Education), which has been pursued for the past two years. The Chapter has been involved in several programs focused on public education.

The major highlight of our activity was the May 2012 Congress at Owerri-Owerri 2012. This Conference was attended by close to 50 people including more than 30 doctors. Also in attendance were students, nurses, pharmacists and other health workers. The theme of the Conference was epilepsy in the community with the guest lecture given by Prof M C Nwosu of the Nnamdi Azikiwe University Teaching Hospital Nnewi, in Anambra State of Nigeria. Other guest speakers were Dr Ogunrin of College of Medicine, University of Benin in the Niger delta; Dr Achor Ju of the Federal Neuropsychiatric Hospital Enugu; and Dr W Igwe, a pediatric neurologist from Nnamdi Azikiwe University Teaching Hospital Nnewi, in Anambra State of Nigeria. Sixteen papers and three lectures were delivered on the various aspects of epilepsy care. The Conference was preceded by public epilepsy awareness both in schools and on radio with great responses from the community. The Conference ended with the National Congress and the following resolutions were taken:

  1. The association’s name was changed from ILAE Nigeria Chapter to Nigerian League Against Epilepsy (NLAE ).
  2. A commission on research was set up to come up with an instrument for epilepsy interview for health caregivers. The aim is to armonize the work of different researchers so that data could be compared.
  3. Two NLAE merit awards were created. One award for distinguished members of the Association or Society with regards to epilepsy are and a second award for any research student who engages in epilepsy research.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Other important events of 2012 were the various awareness programs and community work of Prof MC Nwosu and his team at Ukpo in Dunukofia in Anambra state, the awareness program of Mrs Asemota AO. She founded the Angie Epilepsy group after her child developed epilepsy and her marriage broke up because of the child’s illness. She has held several meetings where basic but important issues about epilepsy were treated by our members who act as her resource persons. She presented a paper at the Nigeria Society of Neurological Sciences at Oshogbo in 2012.

Educational Activities

Activities so far:

  • Four epilepsy radio programs since 2009
  • Epilepsy School Program reaching close to 2,500 students
  • Conferences, scientific meetings and workshops. More than 150 participants attended these conferences with more than 45 research papers presented
  • Two EEG training sessions. One session of epidemiological research
  • Individual efforts have been encouraged leading to the setting up of Ukpo Epilepsy Center, Mgbowo research center and Angie Epilepsy Program Advocacy
  • NLAE is working together with teaching hospitals and specialist hospitals to enhance epilepsy care.

Future Plans

  • 2013 Congress
  • Village/Town hall awareness meetings
  • 2013 radio and school programs.

Officer Election Date

2014

Report By

Dr Ezeala-Adikaibe Birinus

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EPILEPSY ASSOCIATION OF PAKISTAN

Summary of Activities in 2011 and 2012:

In Pakistan, a public awareness campaign for epilepsy has been ongoing for more than two decades, with most activity since 2001. Various projects have been undertaken and new ones are being developed to achieve the main objective of “changing the nation’s mind-set towards epilepsy, the disorder and people with epilepsy (PWE); and decreasing the treatment gap.”

In 2011-2012 the main focus was on epilepsy awareness via electronic media. Comprehensive Epilepsy Control Program of Pakistan produced an epilepsy awareness documentary to educate the masses about the nature of the disorder, its treatability and reiterating the fact that the majority of PWE are ‘normal’ human beings. Abdul Sattar Edhi, a social worker par excellence of international repute (many times more than ‘Mother Teresa’ because of the diversity and quantum of his humanitarian services for more than 60 years), who is known to every Pakistani, and a patient, Ms Sulakhshana Laloo Kamley, talk about their epilepsy and how it has not affected their lives. This is a definite morale booster for the epilepsy patients and their caretakers. All information is conveyed through a collection of bulleted messages to keep the duration brief (five minutes) in view of the limited attention span of an average TV viewer (with ~100 channels, they keep on surfing) and to reduce the telecast costs. This documentary has been produced with narration in Urdu, English, Sindhi, Pushto and Balochi.

Paid telecasts on popular satellite television channels in the national and regional languages are also being done. The documentary is being telecast twice a day for three months on each channel. To date, the documentary has been aired on three channels in three of the four provincial languages. This documentary has been exhibited at the ILAE Congress booth. The production of this documentary and paid telecasts has been sponsored by Novartis Pharma (Pakistan) Ltd.

Patient Management at the NGO-run National Epilepsy Centre (NEC), Karachi, continues where patients are supplied monthly medicine at a token cost (~2 percent of the actual cost; the remaining being born by a philanthropic family) and EEG done at highly subsidized rates. The radiology department of the public sector hospital provides the facility of MRI & CT at subsidized rates. All specialists at NEC extend voluntary services and ensure strict compliance. On 31 December 2012 the number of registered NEC patients was 5,315.

Educational Activities

An ASEPA Teaching Course on Focal Epilepsy was held in Karachi, Pakistan, 29-30 January 2011. International speakers Drs Y Inoue, R Neshige, and Y Koide from Japan and some local speakers spoke on various aspects of focal epilepsy. The workshop was followed by four-day EEG training workshops by Dr R Neshige held in Karachi and Lahore. These trainings were highly appreciated by the participants who have shown a desire to attend further such workshops. The number of participants was as follows: Karachi focal epilepsy workshop – 110; Karachi EEG workshop– 65; Lahore EEG workshop – 90.

ASEPA-ASNA EEG Certificate examination – Part One was held on 30 January under supervision of Dr Yushi Inoue; 18 candidates took this exam.

A handbook on epilepsy management for general practitioners with a CD showing various seizure types was distributed under the aegis of Comprehensive Epilepsy Control Program of Pakistan among primary care physicians.

Future Plans

The paid telecasts of the epilepsy awareness documentary on satellite television channels shall continue for our message to penetrate into most households and reach the maximum population in Pakistan. Workshops for primary care physicians in various cities and towns are being planned. An epilepsy update symposium for specialists with possible foreign speakers is also on the agenda.

Officer Election

June 2012

Report By

Prof Shaukat Ali, President

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PHILIPPINE LEAGUE AGAINST EPILEPSY (PLAE)

Summary of Activities in 2011 and 2012

Opening the new secretariat. The need to find a more spacious, efficient and strategically located administrative office emerged during the revisiting of the Mission and Vision of the PLAE in 2008 in response to the clamor for better communications and increasing participation among our members. We have an organization email address where members can write about their concerns:
plaesecretariat@yahoo.com. The website, www.plae.org.ph is continuously being updated withthe help of Pfizer. With the secretariat we have received inquiries about our projects from media, patients and potential members of the ILAE. We have also updated our Roster of Members, membership status, dues and financial reports. We have an active roster of 154 members. We also have updated registration and financial reports with the Securities and Exchange Commission.

Recommitment workshop of the Epilepsy Campaign volunteers. When the Epilepsy Campaign was launched in 2001, we asked for doctor volunteers who would implement the awareness campaign in Manila and in other provinces nationwide. We called them PAVES (Public Awareness Volunteers for Epilepsy)-BRIDGES (Bridging Referrals in the Delivery of Grassroots Epilepsy Services). We started with only 20 volunteers who committed 1) to holding a free epilepsy clinic for indigent patients in their own communities, and 2) to holding at least two lay forums in their communities or hospitals every year. Over the years, the number of volunteers has increased to forty. In July 2012 we convened the PAVES for a day of recommitment, updating and planning for future projects of the PLAE. We awarded plaques for appreciation for our outstanding volunteers who initiated and implemented innovative awareness programs and rendered service “beyond the call of duty.”

Epilepsy Surgery Study Group. This group was organized in April 2010 to address the problem of underutilization of epilepsy surgery as a mode of treatment in refractory epilepsy in the country. In spite of the availability of four comprehensive epilepsy centers in Manila with several epileptologists and epilepsy surgeons trained in the United States and Australia, the referral rates are still low. The objective of the group is

  1. to promote awareness of epilepsy surgery as a standard form of treatment for refractory epilepsy,
  2. to address factors that contribute to its underutilization, and
  3. to develop a locally relevant algorithm for referrals of refractory epilepsy cases to epilepsy centers.

The 1st Epilepsy Surgery Forum entitled, “Epilepsy Surgery in the Philippines: Overcoming Challenges in a Developing Country” was held on 6 September 2010 and was attended by 106 participants. Proceedings from the forum were presented at the midyear convention of the Philippine Neurological Association on 3 June 2011. The study group intends to have the proceedings published as a guideline. We have also started quarterly Epilepsy Surgery meetings that will be rotated in different epilepsy centers in Manila.

The National Epilepsy Registry. Last year, the Partners In Epilepsy database software was made available for the exclusive use of PLAE by Jansen for the National Epilepsy Registry. We developed the research protocol, informed consent and memorandum of agreement between Jansen and PLAE. They also devised a mechanism for securing data in each clinic and hospital, and then transferred to a central database. Research coordinators from the training hospitals in Manila attended the orientation for the launching of the Registry. The fund for the Registry was already prepared for the purchase of computers. A technical grant was donated by Janssen. However, due to some last minute problems with the coding of the software copies, the launching of the Registry has been delayed. Once this is resolved, the Registry will be launched early next year.

Epilepsy Awareness Week 2010. The 9th Epilepsy Awareness Week was celebrated from 5-12 September 2010 with the theme “Pushing Boundaries in Epilepsy.” This encompassed our initiatives to do something that has not been done before, to talk about things that have not been tackled in the past, and to go to places where we have never been before. The 1st Epilepsy Surgery Forum was held as described above. Then we decided to push further geographically, going south to Butuan in Mindanao for the National Epilepsy Camp. The regular activities done yearly, like the lay forum and the media campaign on TV and print media were carried out. The Epilepsy Exemplar awards ceremony was held in the GSK Auditorium during Epilepsy Week in September 2010. Three awardees with epilepsy were given special recognition, among them a teacher/guidance counselor from La Union, a math teacher from Manila, and a student from Nueva Ecija.

We also continued the Epilepsy School Caravan Project which was launched in the last quarter of 2009. With more confidence to implement the innovative storytelling-dance module on epilepsy after the initial salvo, our volunteers continued to reach out to many grade schools around the country, reaching 108 schools by the end of Epilepsy Week 2010.

Reorganization of the EAAI. The Epilepsy Awareness and Advocacy Incorporated (national lay support group) elected its new officers December 2010. They took charge of organizing the 3rd National Lay Symposium entitled “Epilepsy ay Huwag Ibalewala, Kinabukasan ay Ihanda” which was held on 14 September 2011. They maintain a Facebook account that allows patients to interact regarding their experiences and seizures. They are assisting in the organization of the Epilepsy and Society Program for the Asian Oceanian Epilepsy Congress in Manila in 2012. The PLAE continues to guide and support them as they take their first few steps to becoming a truly national organization of persons with epilepsy.

Ketogenic Diet Study Group. The Ketogenic Diet Study Group was organized 1 April 2011. Their objective is to explore the usefulness, feasibility and applicability of the Ketogenic Diet in the Philippines. They have met a few times to formulate a protocol which is affordable and applicable to Filipino patients (i.e. powdered coconut milk) who might benefit from the diet. A Ketogenic Diet Registry form and a Symposium are being considered as future plans.

The Epilepsy Manager Project (EMP). In April 2010, three trainees of the Epilepsy Manager project from remote areas of Iloilo in Panay Island graduated from this one-year mentoring program on epilepsy. They have returned to their communities. We hope their Epilepsy Clinics will continue.

For 2011-2012, the Epilepsy Manager Project received sponsorships for three possible areas for training general practitioners or municipal health officers. Initially the EMP was scheduled for Naga, Camarines Sur, Misamis Oriental and Lanao del Norte. At last, we have gone over to Mindanao, where it is most needed! We are training 10 rural medical doctors this year. Twenty-six dedicated PLAE members go in pairs and take turns in visiting the epilepsy clinics and mentoring the doctors monthly in ten remote areas this year.

8th Asian Oceanian Epilepsy Congress in 2012. The highlight of our term is the privilege to be chosen as the host. Several visits by the ILAE Convention staff and by the International Scientific Committee and IBE were made in preparation for the big Congress on 22-25 March 2012. The PLAE will participate in the Scientific Program by sharing in a significant number of the lectures given by our local experts.

10th National Epilepsy Awareness Week from 3-10 September 2011 was opened by a Negosyo Fair, a livelihood training program on 3 September for epilepsy patients and their families. The day was capped by a dinner fellowship, “A Decade of Making a Difference,” at the Club Filipino to mark the 10th anniversary of the National Epilepsy Campaign, and to launch the new theme for National Epilepsy Awareness Week, “Seize Epilepsy. Seize Control. Seize Life.” Epilepsy seminars and Epilepsy School caravans were conducted in several hospitals and schools in Manila, Cagayan, Tacloban, Baguio, Lucena, Mindoro Occidental during the first week of September.

6th National Epilepsy Congress. Our theme for this year is “Epilepsy, Mind and Behavior.” This year’s Congress is exceptional because it is the first time we are having four international speakers, including no less than the president of the International League Against Epilepsy himself, Dr Solomon Moshé, Michel Baulac, Marco Mula and Deepak Gil. An expected 300 delegates will attend this Congress.

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POLISH SOCIETY OF EPILEPTOLOGY

Publications

Contribution to textbook (in Polish) “Women and Epilepsy” (at press).

Meetings

In 2011: XXIII Conference on Epilepsy organized by Polish Society on Epileptology (PSE), Warsaw, 19-21 May with 400 participants

In 2010: XXIV Conference on Epilepsy organized by Polish Society on Epileptology, Warsaw, 17-19 May with 400 participants

National experts on various fields of epilepsy were invited to give lectures. The topics covered were: epilepsy and pregnancy, video-EEG diagnostic values in different types of epileptic syndromes and non-epileptic events. A very important session was devoted to quality of life problems, especially the impact of communication between the medical doctor and patient.

Summary of Activities in 2010 and 2011

  • 5th Baltic Sea Summer School on Epilepsy, Sopot, 19-24 June 2011. It was a great challenge for the PSE to help organize a successful and memorable course for 44 participants from 17 countries
  • Many public lectures and discussion group meetings have been organized with neurologists on public health awareness
  • Organization of Central Europe Epilepsy Experts Working Group Meeting January 2011– Presentations and discussion on epilepsy patient management in Central European countries.

Summary of Activities in Relation to Global Campaign in 2010 and 2011

Patronizing and supporting the Valentine Epilepsy Days every year on 14 February. ‘Notice me’ is the national campaign of different patient associations from all over Poland. It was launched in 2009 in Warsaw. In 2011 the campaign gained a new event – Nordic Walking March. The motto of the March was “Notice me walk healthy.”

An important part of our activities in 2010 and 2011 are contacts with the Ministry of Health and National Health Fund. The main problem was reimbursement for patients for new AEDs. Finally, as of January 2012 Levetiracetam is free for patients with epilepsy.

Educational Activities

  • Regular educational courses and workshops on epilepsy in Poland
  • Working group on epilepsy and pregnancy, on quality of life, with the elaboration and validation of an original questionnaire for patients and caregivers
  • Working group on videos, with the collection of informative videos on different seizure types and elaboration of appropriate tools for the didactic presentation of the material.

Activities in Conjunction with Local IBE Affiliate

Continue helping the organization by providing an umbrella function and coordinating the local societies. Patronizing the Valentine Epilepsy Days. At the moment in Poland, there exists 14 organizations of patients (nine are district Chapters of Polish People Suffering from Epilepsy established in 1985).

Future Plans

  • To continue the regular educational courses
  • To elaborate the new standards of quality control, to epilepsy care in Poland
  • There will be a reunion Polish School of Epilepsy
  • We are preparing to produce a national guideline on management of epilepsy in adults and children in conjunction with the Polish Neurological Society.

Officer Election Date

2014

Reported By

Joanna Jędrzejczak

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PORTUGUESE LEAGUE AGAINST EPILEPSY

Summary of Activities in 2011 and 2012

The Iberian Annual Meeting occurred in Malaga in October 2011. The next Iberian meeting was in October 2012, in the city of Porto. The 23rd National Epilepsy meeting took place in Lisbon on 18-19 March 2011. The 24th National Epilepsy Meeting took place in March 2012, in Coimbra. Four epilepsy surgery forums, with participants from all Portuguese centers, were also organized to discuss several clinical cases, and took place in March 2011, November 2011, March 2012 and November 2012. The 6th Migrating Course occurred in porto in June 2012. This course was organized in close collaboration with the European Commission Affairs of the ILAE.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

The Portuguese League launched a national program, that was up and running in October 2011 and will carry on until March 2013; a set of educational videos about seizures was produced; there was a presentation of a multimedia exhibition that will occur throughout 2013. With the approval of the Written Declaration on Epilepsy by the European Parliament, the Portuguese League scheduled a set of measures to promote a better understanding of epilepsy among politicians.

Educational Activities

The Portuguese League in collaboration with the patients association launched a national program, which was presented for the first ime in March 2012, at the National Epilepsy Meeting, during a ceremony that various politicians, sports people and artists attended. The 6th Migrating Course occurred in Porto in June 2012. This course was organized in close collaboration with the European Commission Affairs of the ILAE. A great number of photos were taken with several sports people and patients, which are exhibited with the Stand Up for Epilepsy initiative.

Activities in Conjunction with Local IBE Affiliate

The Portuguese League in collaboration with the patients association launched a national program, which was presented for the first time in March 2012, at the National Epilepsy Meeting, during a ceremony that various politicians, sports people and artists attended. It was up and running in October 2011 and will carry on until March 2013; a set of educational videos about seizures was produced; there was a presentation of a multimedia exhibition, that will occur throughout 2013.

Future Plans

The 25th National Epilepsy Meeting, will take place 8-9 March 2013, in Porto. An epilepsy surgery forum, with participants from all Portuguese centers, will occur on 7 March 2013 to discuss several clinical cases.

Report By

Francisco Sales

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QATAR NEUROLOGY AND QATAR LEAGUE AGAINST EPILEPSY (QLAE)

Publications

Al Hail, Hassan. Epidemiology and Etiology of Intractable Epilepsy in Qatar, Qatar Medical Journal volume13/number1; June 2004, pp. 11-13. Regional neurology journals: 2-Deleu D, Mesraoua B, Al Hail H, Dsouza A, Mahmoud HA.

Summary of Activities in 2011 and 2012

  • Qatar Annual Neurology and Epilepsy meeting February 2011 and 2012
  • Five neurologists from Hamad Hospital attended the 28th International Epilepsy Congress, 29 to 1 October 2012 in London
  • Recently, two neurologists had attended the Asia epilepsy conference at the 2011 China Epilepsy Congress.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Educational Activities:

  • Training workshop on Electroencephalography for young neurologists was held in the Department of Neurology in Hamad General Hospital
  • Regular training for medical students form Weil Cornell Medical Faculty in Doha
  • Participation with epilepsy cases in the Hospital weekly Neurology Grand Round.

Educational Activities

Expert exchange programs for internationally known neurologists and epileptologists as visiting consultants for patient care and lecture presentations. Last year we invited Prof Dr Wisser from Switzerland and Prof Dr E Perucca from Italy and many other neurologists from the Region to the 6th Qatar Regional Neurology Conference. In February 2011, different international and national speakers will be focusing on epilepsy and other neurology topics in the 6th Qatar Neurology Conference.

  • Published small books on epilepsy written for the public in Arabic language explaining different aspects of epilepsy symptoms, diagnosis and treatment. The first book (about 100 pages) was written by Dr Hassan Al Hail and the second book (about 200 pages) was written by Dr M Fawzi, a pediatric neurologist
  • Several education media programs about epilepsy were made for local Qatar TV and local newspapers
  • An Intranet site was established in our Hospital website. The website http://qatarneuroscience. webs.com/; focuses on epilepsy ducation and other aspects
  • Our neurology department staff members have attended and participated in many regional, local and international epilepsy conferences.

Activities in Conjunction with Local IBE Affiliate

The Qatar League Against Epilepsy (QLAE) was established in 1995 and since that time is the Qatar Chapter of the International League Against Epilepsy (ILAE) and the International Bureau of Epilepsy. During the recent years QLAE had initiated several educational and Congress activities. Several local and regional (Gulf Region) neurology and epilepsy conferences took place.

Future Plans

Working to get approval and support to have East Med Epilepsy Conference in 5-7 October 2013

  • Upcoming 7th Annual Qatar Epilepsy meeting 15-17 February 2013
  • Upcoming annual pediatric epilepsy training PET1 and PET2 28 February to 3 March 2013. Working to get comprehensive epilepsy center
  • Increase our staff physician and EEG technologist numbers
  • Several works for publication are in progress: Epidemiology of Epilepsy in Qatar, Knowledge and awareness of epilepsy in epilepsy patients and their families
  • Get approval for a national epilepsy day.

Officer Election Date

March 2013

Report By

Dr Hassan Al Hail and Dr Tage eldin Sokrab

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SAUDI CHAPTER OF EPILEPSY

Publications

Website: www.saudiepilepsysociety.org

Journal: Neuroscience Journal

Objectives

  1. Ensure the official presence of Saudi delegates in scientific and administrative meetings of ILAE.
  2. Supervision of scientific and academic activities related to epilepsy in Saudi Arabia.
  3. Coordinate regular scientific meetings of the Saudi Chapter of Epilepsy in different regions of Saudi Arabia.
  4. Supervision of epilepsy training. Supervision of medical and technical EEG training.

Saudi Chapter of Epilepsy Summary of Activities in 2011 and 2012

  1. Amalgamation of Saudi Epilepsy Society (SES) and Saudi Chapter of Epilepsy (SCE).
  2. Updated the SES – SCE bylaws.
  3. Provide information materials about epilepsy (available at the SES website).
  4. Activate SES website.
  5. Outline the bylaws about Epilepsy and Driving in collaboration with the Saudi Traffic and Safety Department (still in process).

The Saudi Epilepsy Society has formed ten Committees to carry out strategic planning and to improve the level of epilepsy education.

  1. Research, Education and Scientific Committee
  2. Epilepsy Surgery and Neurosurgery Committee
  3. Child Epilepsy Committee
  4. Psychiatry and Neuropsychiatry Committee
  5. Adult Epilepsy Committee
  6. Neurophysiology Committee
  7. Neuropsychology Committee
  8. Website Committee
  9. Media Committee

Saudi Epilepsy Society Summary of Activities in 2011 and 2012

  • 1st Annual Saudi Epilepsy Society Symposium (Endorsed by the ILAE-CEMA) Riyadh, 11-13 January 2011
  • Ketogenic Diet in the Management of Intractable Epilepsy Dammam, 23 February 2011
  • Epilepsy and Driving (Endorsed by the ILAE-CEMA) Riyadh, 22-23 May 2012
    Epilepsy and Driving in collaboration with Saudi Traffic and Safety Department and major hospitals in Saudi Arabia, Saudi Commission for Health Specialties and ILAE-CEMA. Venue: Intercontinental Hotel, Riyadh. Meeting Objectives:
    • Increase awareness about epilepsy and driving
    • Discuss motor vehicle accidents resulting from seizures occurred during driving
    • Discuss the international Bylaws regarding epilepsy and driving
    • Discuss the need for establishing Bylaws in Saudi Arabia regarding epilepsy and driving
    • Discuss the relationship between the insurance companies and the drivers who suffer from epilepsy
  • Participation in Saudi Critical Care Society Symposium, Riyadh, 23-27 April 2011
  • 19th Annual Saudi Neurosciences Symposium, Dammam, 22-24 November 2011
  • 2nd Annual Saudi Epilepsy Society Symposium. Done in collaboration with Saudi Commission for Health Specialties, King Abdulaziz University and ILAE-CEMA. Date: 12-14 November 2012, Venue: Crowne Plaza, Jeddah. This symposium represents a timely proactive response to the need for greater understanding of these disorders. State of the art lectures, updated presentations, workshops and panel discussions will be included in several epilepsy disciplines including clinical adult and pediatric neurology, neurosurgery, neuroradiology, neuropsychology, psychiatry, and clinical neurophysiology. These overlapping areas are generally considered difficult and are not well covered in undergraduate and postgraduate neurology training. The symposium presents a unique opportunity to address important disorders both at the basic and advanced levels. Topics will be presented by a number of distinguished international and national faculty members. We are confident that the presentations will impress, inform, and update our knowledge in these fields. Target Audience: Physicians, Residents-in-Training, Nurses, Technologists, Students and Allied Health Workers
  • 7th Annual Eastern Province Epilepsy Symposium. 10-11 April 2013 at the Sofitel Hotel – Dammam. Topics include: Mesial Temporal Lobe Epilepsy; EEG course; Epilepsy awareness day in Arabic.

Election of Officers

February or March 2013

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SLOVENIAN LEAGUE AGAINST EPILEPSY

Slovenian Epilepsy Association combines both Slovenian ILAE and IBE Board Committee members. This means that both work united in the care for professional development of epileptology in Slovenia, as well as to improve the quality of life of people with epilepsy, their families and friends. Most campaigns were organized by pulling together lay people and experts in the field of epileptology.

Completed Activities in 2011

  • 7th Postgraduate school of practical epileptology with lectures and hands–on clinical seminars according to principles of the original French school with international cooperation (Ecole Pratique Jean Bancaud; French - German- Czech - English - Slovenian): neuropsychiatry of epilepsy; three-day program
  • Gained support of all Slovenian MPs for the European Declaration on Epilepsy
  • 1st European Epilepsy Day (organization of press conference well attended by journalists of various television and radio programs; newspaper and magazine articles – more than 20)
  • Education support: Epilepsy Center Cleveland Clinic – one MD sent
  • Lectures for patients, relatives, teachers and general public (11 lectures in schools and kindergartens)
  • Advice for individuals and groups, help-line telephone (EPITEL) anonymously or in person
  • Support program for patients treated abroad (since surgery is carried out abroad, our Association has a program for escort interpreters – usually medical students) with financial and psychosocial support for families – 13 times
  • Two meetings with parents of children with newly diagnosed epilepsy
  • Printed booklet “My child has epilepsy”; and reprint of leaflet “First aid in epileptic seizure”
  • Four editions of Association newsletter “Žarišče”
  • Coordination of five self-help groups
  • Preparing the ground for new self-help groups
  • 20th anniversary of self-help group, Koper, with round table on “Meeting employer’s fears and concerns in employment of people with epilepsy”
  • Cooperation with other patient organizations and associations
  • Participation in Patient Council of the University Medical Centre in Ljubljana
  • Preparation for the 2nd European Epilepsy Day
  • Two public forums in different parts of Slovenia
  • Meetings of adolescents and young adults with epilepsy
  • Public relations and media exposure of problems with comprehensive treatment of adults with epilepsy in Slovenia.

Completed Activities in 2012

  • 8th postgraduate school of practical epileptology with lectures and hands-on clinical seminars according to principles of the original French school with international cooperation (Ecole Pratique Jean Bancaud French – German – Czech – English – Slovenian): Functional imaging and new approaches for the diagnosis of epilepsy; three day program
  • 2nd European Epilepsy Day (organization of press conference attended by journalists of various television and radio programs; more than 80 newspaper and magazine articles)
  • Attendance of Slovenian MPs at the European Epilepsy Day event in the European Parliament
  • Education support: Epilepsy Center Cleveland Clinic – two MDs and one EEG technician sent
  • Sixteen lectures for patients, relatives, teachers and general public
  • Psychosocial help-line telephone (EPITEL) each Thursday 4-7 p.m.
  • Program for patients treated abroad (our Association has a program for escort interpreters– usually medical students)and financial as well as social support for families – 19 times
  • Two meetings with parents of children with newly diagnosed epilepsy
  • Printed publications include: leaflets and booklets “Epilepsy in the elderly”; reprint of leaflet “Epilepsy and sport”
  • Four editions of Association newsletter “Žarišče.”
  • Coordination of six self-help groups
  • Kindling of new self-help groups
  • 20th anniversary of self-help group, Maribor, with lecture on juvenile myoclonic epilepsy
  • Cooperation with other patient organizations and associations
  • Participation in Patient Council of the University Medical Centre in Ljubljana
  • Preparation for the 3rd European Epilepsy Day
  • Two public forums in different parts of Slovenia
  • Meeting of adults with epilepsy after surgical treatment
  • Public relations with media exposure of problems of comprehensive treatment of adults with epilepsy in Slovenia
  • Started Association website containing all relevant information about our activities
  • Preparations for 13th European IBE Conference “Epilepsy and Society,” 28-30 August in Ljubljana, Slovenia and 9th postgraduate practical epileptology school.

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EPILEPSY SOCIETY OF SOUTH AFRICA

Meeting

9 June 2012

Summary of Activities in 2011 and 2012

A national two-day epilepsy teaching and update meeting was held for the fifth successive year. This attracted 150 neurologists and was well received.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Two of our members presented papers at the inaugural Africa Epilepsy Congress held in Nairobi in June 2012. Good personal contacts were made, which we hope will facilitate collaboration within Africa.

Educational Activities

In Cape Town, a weekly multi-disciplinary clinical meeting devoted to epilepsy is held.

Activities in Conjunction with Local IBE Affiliate

Two of our members serve on the Committee of Epilepsy South Africa, which is the national IBE. Their organization holds an annual epilepsy awareness week to which we contribute speakers.

Future Plans

  1. To increase our collaborative efforts in the field of epilepsy, particularly in the sub-Saharan region of Africa.
  2. To establish a website which will be of value both to the medical community and to the public.

Officer Election Date

15 March 2013

Report By

Prof Roland Eastman

SWEDISH EPILEPSY SOCIETY

Summary of Activities in 2011 and 2012

Drawing up guidelines for epilepsy care and a national epilepsy registry

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Participation in photo exhibition, London 2012

Educational Activities

Courses and workshops: Different aspects of Refractory Epilepsy; Dravet syndrome: from genes to ion channels; Bridging basic and clinical epilepsy; Standardized Computer Organized Reporting of EEG (SCORE); Evidence-based epilepsy care; Neonatal CFM-monitoring; and DBS for epilepsy

Activities in Conjunction with Local IBE Affiliate

  • European Parliament Written Declaration on Epilepsy: work on Swedish members of the European Parliament
  • Epilepsy Day

Future Plans

  • National epilepsy register
  • Preparing for ECE in Stockholm 2014
  • Educational activities for epilepsy nurses
  • Educational course on Tuberous Sclerosis
  • Educational course for epilepsy team

Officer Election Date

9 November 2012

Report By

Eva Kumlien

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SWISS LEAGUE AGAINST EPILEPSY

Summary of Activities in 2011 and 2012

Publications

  • Journal Epileptologie (Epileptology), publication four times a year, 50-70 pages each, with information about new developments in epilepsy research and treatment (for professionals, 1,500 copies)
  • Newsletter Epilepsie News, publication three times a year, four pages each, with information about the activities of the League and about epilepsy (for laypersons, about 22,000 copies in German, about 8,000 copies in French).

2011

  • Brochure on “Prizes and Grants in Epileptology” in German (350 copies)
  • Annual report in German and French (1,000 copies)
  • Brochure on events of the Swiss League Against Epilepsy in German and French (3,000 copies)
  • Monthly electronic newsletter (more than 10,000 German-speaking recipients and 3,600 Frenchspeaking recipients).

2012

  • Brochure on “Prizes and Grants in Epileptology” in German (100 copies)
  • Three new information leaflets on Vagus Nerve Stimulation, Compliance, and on Ketogenic Diet in German (8,000 copies) and French 2,000 copies)
  • Annual report in German and French (1,100 copies)
  • Brochure on events of the Swiss League Against Epilepsy in German and French (2,500 copies)
  • Monthly electronic newsletter (more than 10,000 German-speaking recipients and 3,600 Frenchspeaking recipients)
  • Special edition of the journal Epileptology, publication of the Survey of Public Attitudes towards Epilepsy in Switzerland.

Meetings

  • 7th Joint Meeting of the German, Austrian and Swiss Chapters of the International League Against Epilepsy (ILAE) in Graz, Austria, 1-4 June 2012
  • Annual Congress of the Swiss League Against Epilepsy, the Swiss Society of Clinical Neurophysiology and the Swiss Neurological, in Lugano, 3-5 May 2011.

Participation at different meetings, Congresses and courses including: “Journée Romande d’épileptologie” in Lausanne; Multi-professional Symposium in Zurich; Symposiums on Epilepsy in Zurich, Basel and Bern

2011

  • Three annual events in different cities, for laymen, with several lectures by epilepsy experts. Main Topic: “Life with Epilepsy”
  • Three annual events in different cities, for professionals, with several lectures by epilepsy experts
  • TV-Spot “Together” for the German part of Swiss TV
  • Awarded a grant (CHF 20’000) for the most promising research study in Switzerland in the field of epileptology
  • Awarded Franco Vassella, Bern, with the Tissot medal, offered by the Swiss League Against Epilepsy
  • Awarded of the “Hauptmann-Preis” (10.000 Euros) in Graz, Austria
  • Publication of a Position Statement of the Swiss League Against Epilepsy: Use of Generic Antiepileptic in the Treatment of Epilepsy
  • Social Research: Survey of Public Attitudes towards Epilepsy in Switzerland.

2012

  • Three annual events in different cities, for laypersons, with several lectures hold by epilepsy experts. Main Topic: “Life with Epilepsy”
  • Three annual events in different cities, for professionals, with several lectures hold by epilepsy experts
  • Awarding of a grant (CHF 20’000) for the most promising research study in Switzerland in the field of epileptology
  • Campaign with Yann Sommer, goalkeeper of FC Basel, Swiss Champion in 2012: DVD production, photos and media, participation in the exhibition “Stand up for Epilepsy” of the 10th European Congress on Epileptology, in London, September.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

2011: Main event on the “Day of Epilepsy,” 5 October, in Zurich. Topic: “Epilepsy and Social Media.” Open to laypersons and professionals accompanied by a media campaign.

2012: Main event on the “Day of Epilepsy,” 4 October, in St Gallen Topic: “Epilepsy and Mobility.” Open to laypersons and professionals accompanied by a media campaign.

Educational Activities

2011: Lectures for the staff of the pharmaceutical industry

2012: Lectures for the staff of the pharmaceutical industry

Activities in Conjunction with Local IBE Affiliate

2011: Special day for patients and their relatives. Topic: “Epilepsy and Hormones”

2012: Special day for patients and their relatives. Topic: “Side Effects of Antiepileptic Medicaments”

Future Plans

Publication of the Report Epilepsy in Switzerland

Officer Election Date

Spring 2013

Report By

Daniela Erb, Secretary-General

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TAIWAN EPILEPSY SOCIETY (TES)

Publications

  1. Taiwan Epilepsy Guidelines
  2. Archives of Taiwan Epilepsy Society
  3. Consensus of Chinese Translation of Epilepsy Terminology

Meetings

  1. 9 April 2011 Annual Meeting of Taiwan Epilepsy Society
  2. 14 April 2012 Annual Meeting of Taiwan Epilepsy
    Society

Summary of Activities in 2011 and 2012

The years 2011 and 2012 were periods of remarkable developments both domestically and internationally for Taiwan Epilepsy Society (TES).

  1. The TES held its Annual Meeting in April 2011 and 2012 (Taipei). Both meetings were very well attended and provided many thought-provoking sessions.
  2. The year 2011 also marked the change of office for the TES Board of Directors. The new Board was elected at the Annual Meeting of TES held on 9 April 2011, and Prof Tony Wu was elected as president of TES.
  3. Completed the first version of “Taiwan Epilepsy Guidelines” in 2012.
  4. Compiled “Archives of Taiwan Epilepsy Society” in 2012.
  5. Delegates from six Chinese-speaking areas (China, Hong Kong, Macau, Malaysia, Singapore, and Taiwan) signed consensus agreement on Chinese translation of epilepsy terminology on 25 November 2011 at Xiamen.
  6. Co-organization of the “6th Antiepileptic Drug Treatment Conference” (with Asian Epilepsy Academy, ASEPA).
  7. Three research awards are given annually, including “Young Investigators Travel Award,” “Epilepsy Best Paper Award,” and “Epilepsy Research Award”

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Stand Up For Epilepsy – Taiwan Epilepsy Sports Day– To support the “Stand Up For Epilepsy” project of ILAE and encourage people with epilepsy to do outdoor activities, TES organized an exciting and innovative event “Taiwan Epilepsy Sports Day” on 12 May 2012. Over 250 people with epilepsy, their families, and doctors in Taiwan took part in a running event with Taiwanese ultra-marathon champion Kevin Lin in the square of National Chiang Kai-shek Memorial Hall, Taipei. The major aim is to encourage patients with epilepsy to actively participate in sport and physical activity, and urge the right of doing physical exercise for people with epilepsy. The TES specifically asked swimming pool operators to take off the regulation that “people with epilepsy are prohibited from entering the swimming pools.” A well-designed gift, “Seizure First Aids Tips” necklace, was presented to each patient. Wearing this necklace during exercise may provide urgent safety and supportive information if seizure happened. The event ended with a renewed enthusiasm to “stand up for epilepsy” together with a fresh understanding that people with epilepsy, like athletes themselves, can be inspired to achieve their goals and lead active lives.

Educational Activities

  1. “6th Antiepileptic Drug Treatment Conference” (co-organized with Asian Epilepsy Academy, ASEPA) on 3 July 2011 in Taipei.
  2. “Young-Star Epilepsy Training Program” was delivered once a year (6 November 2011 and 21 October 2012 in Taipei). This program was addressed to residents in neurology/neurosurgery/ pediatric neurology, especially for those who just passed the Neurology Board Examination. The courses were limited to a maximum of 130 participants each year and were fully booked.
  3. “Continuing Medical Education Program: Syndromic Diagnosis of Epilepsy” was conducted three times in Taiwan in 2012.
  4. "EEG Education Courses” were conducted three times each year in Taiwan.
  5. “Introduction and Managing Patients with Epilepsy” was conducted three times in 2012, in order to provide comprehensive epilepsy education to nursing professionals.
  6. “Introduction of Epilepsy” was conducted three times each year. This course was addressed to school staffs and nurses, in order to raise awareness, communication and education on the theme of epilepsy. More than 1,000 teachers or school nurses attend the courses.

Activities in Conjunction with Local IBE Affiliate

See above Taiwan Epilepsy Sports Day

Future Plans

  1. The Taiwan Epilepsy Society Annual Meeting will be held in Taipei in 27-28 April 2013.
  2. Two Task Forces on “Neuromodulation Therapy for Epilepsy” and “Epidemiology Studies of Epilepsy in Taiwan” will be formed, in order to gather and integrate expert and members who are interesting in these two fields.

Officer Election Date

April 2013

Report By

Siew-Na Lim, MD, PhD, Secretary-General

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TURKISH LEAGUE AGAINST EPILEPSY

Publications

Epilepsi journal published three times a year with two supplements

Meeting

8th National Epilepsy Congress

Summary of Activities in 2011 and 2012

Monthly meetings: held in Kalyon Otel, Sultanahmet, Istanbul.

  • 27 January 2012 Panayiotopoulos Syndrome Prof Aysin Dervent MD
  • 24 February 2012 Epilepsy and Depression Prof Marco Mula MD
  • 30 March 2012 Status Epilepticus Prof Reetta Kalvianen MD
  • 20 April 2012 Case presentations Workshop
  • 9 November 2012 Intractable epilepsy: A role of multidrug resistance proteins and transporters, Prof Heidrun Potschka

8th National Epilepsy Congress held 24-27 May 2012 in Bodrum Mugla.

  • over 400 Congress attendees
  • Half-day EEG teaching course with nine lectures, four satellite symposia, 11 main sessions, 83 presentations (both poster and platform)

Epilepsi journal of Turkish League Against Epilepsy. Published three times during the year with two supplements (one for the Congress abstract and one on epilepsy surgery).

Educational Activities

EEG teaching course that was held with the National Epilepsy Congress

Future Plans

  • 11 January 2013, Anti-neuronal antibodies in epilepsy and encephalitis, Assoc Prof Erdem Tüzün, MD
  • 25 January 2013, Genetics of epilepsy- Istanbul University experience, Prof Ugur Ozbek, MD, PhD
  • 22 February 2013, Teratogenesis and epilepsy, Prof Kim Meador, MD.
  • 29 March 2013, Recent imaging findings in juvenile myoclonic epilepsy and multimodal imaging in cryptogenic focal epilepsy, Christian Vollmar, MD.
  • 26 April 2013, Neuroimaging and connectivity of the epileptogenic network, Prof Fabrice Bartolomei, MD, Maxime Guye, MD. Meetings will be held in the Kalyon Hotel Sultanahmet Istanbul at 6:30 p.m.

Officer Election Date

2014

Report By

Kadriye Agan

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EPILEPSY SOCIETY UGANDA (EPISOU)

Publications

  1. Article “Nodding Syndrome In Northern Uganda– A Growing Threat For The Region.” Dr Angelina Kakooza. Epilepsy News Africa (The newsletter of the Commission on African Affairs) Issue 2. Volume 1 Jan-Mar 2012. Page 10.
  2. Research article: “Clinical, Neurologic, and Electrophysiologic Features of Nodding Syndrome, Kitgum, Uganda: An Observational Case Series” James J Sejvar, Angelina Kakooza, Jennifer Foltz, et al. Lancet Neurology published online 8 January 2013 ttp://dx.doi.org/10.1016/S1474- 4422(12)70321-6.

Meetings

We have held a series of local meetings since the inception of the Society in 2006.

Summary of Activities in 2011 and 2012

  1. Held a series of Mental Health Advocacy Forum meetings (2010-2011) with other partner NGOs to advocate for equal rights and opportunities for all people affected by mental, neurological and substance use problems in Uganda. We came up with a strategic document to guide the relevant stakeholders toward better essential services for people affected by mental, neurological and substance use problems.
  2. Drs Richard Idro and Angelina Kakooza gave oral presentations at the 8th IBRO World Congress of Neuroscience in Florence, Italy 14-18 July 2011 on “Brain injury in cerebral malaria: Integrating clinical, biochemical, and brain imaging studies to assess pathogenesis” and “Prevalence and Clinical Description of Epilepsy in a Rural Community in Uganda,” respectively.
  3. Epidemiological multi-site survey of “Studies of the epidemiology of epilepsy in demographic surveillance sites” completed in the Iganga/Mayuge demographic surveillance site.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

As a Society we are committed to dispelling the myths and raising awareness about epilepsy care and treatment in our country through audio visual media, continuing medical education sessions, print medialocal newspaper articles and regular bulletins (media clips & newspaper articles have been produced during this period).

Educational Activities

  1. Held a successful three-day educational program in conjunction with the International Child Neurology Association (ICNA)/ Africa Child Neurology Association (ACNA) on the clinical aspects of childhood epilepsy in Africa, 2-4 February 2012 at the Lake Victoria Hotel, Entebbe, Uganda. (Delegates from 19 countries from Africa attended.)
  2. Wrote an article to educate the general public in The Uganda Health Information Digest, Volume 16, Number 1 January-April 2012 entitled “Seizure Disorders in Childhood.”

Activities in Conjunction with Local IBE Affiliate

Partnered with Epilepsy Support Association Uganda (ESAU) to present the Epilepsy National Advocacy Conference on 7 December 2012. The Conference was aimed at creating a national forum of professionals, policy makers and other service providers to share experiences related to their work and explore avenues for future collaboration and networking in the field of epilepsy.

Future Plans

  1. To create awareness about epilepsy and encourage the public to be supportive to people with epilepsy. This will be in partnership with ESAU. We plan to target 10 primary schools within Kampala, have talks with the teachers and pupils on epilepsy, types, causes, prevention, management and referrals.
  2. To develop information, education and communication materials on epilepsy. We plan to print posters and stickers on key messages about epilepsy. Sources of funding are being explored.
  3. To formally set up an “Epilepsy Purple Day” in Uganda as an annual event to awareness about epilepsy countrywide.

Officer Election Date

February 2014

Report By

Angelina Kakooza

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UKRANIAN LEAGUE AGAINST EPILEPSY (ULAE)

Summary of Activities in 2011 and 2012

  • Annual Ukrainian League Against Epilepsy meeting, Kiev 12-14 May 2011
  • Annual Ukrainian League Against Epilepsy meeting, Uzhgorod 11-13 October 2012
  • Creation of Epilepsy Register 2012-2013, Creation of Experts Council 2012.

Educational Activities

  • Free access to HINARI content provided by Ukrainian League Against Epilepsy for 2012-2013
  • Visiting lecturers to different parts of Ukraine (every two months)
  • Publishing Herald of Epileptology (journal of ULAE)

Future Plans

Visit of CEA Chairman to Ukraine for future actions coordination.

Officer Election Date

14 May 2011

Report By

Volodymyr Kharytonov

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EMIRATES LEAGUE AGAINST EPILEPSY (UAE)

Summary of Activities in 2012

The year 2012 was a year of hard work in several fronts aiming towards helping people who have epilepsy, and in generating resources to further the mission through organized activities and volunteering. It was a year of remarkable developments and achievements.

  1. The First UAE Epilepsy Congress was held in Dubai from 13-14 April 2012. A total of 112 delegates attended the Congress and several interesting papers and up to date advances in the field of epileptology were presented.
  2. Membership has increased, with an additional 12 members joining the Chapter since 1 January 2012. Namely, there is a constant increase in pediatricians, and neurologists.
  3. Three scientific meetings were held this year. They were attended by more than 30 delegates. These meetings were very well received and had generated fruitful discussions.
  4. Epilepsy public awareness day took place on the same day of the opening of Emirates League Against Epilepsy (ELAE) 2012 Congress. It was attended by patients and families with epilepsy. The ELAE made educational materials available to the public and many brochures about the disorder were distributed in both Arabic and English languages. Furthermore, several radio talk shows and TV interview were held in that week to further enhance the mission of increasing the awareness and understanding of this disorder.
  5. The ELAE has started a program to educate the healthcare providers about this disorder, diagnostic challenges and update them on various treatment modalities. The first program was held in Ras Al Khaima and was very well attended by more than 60 healthcare providers. The feedback of this activity was extremely positive.

Future Plans

  1. The preparation for the second UAE Epilepsy Congress is underway with an ambitious plan to host more delegates this year, both locally and regionally. Renowned international and regional speakers are invited to speak at the congress.
  2. A Task Force for Epilepsy Purple Day 2013 is planning week-long activities aiming to increase public awareness about the disease through media forums, and other interactive open public sessions.
  3. Reach-out programs will continue with a plan to reach out to other emirates thoughout the year.
  4. Scientific Chapter meetings will use other formats in addition to didactic lectures and prepare challenging case studies, journal club materials, and EEGs cases.
  5. We aim to work on enhancing the epilepsy support group activities in collaboration with our colleagues in the contributing hospitals.
  6. Establish an associate category under which EEG technicians can subscribe, and to promote educational activities for them.

Prepared by

Taoufik Alsaadi, President, ELAE

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UNITED STATES: AMERICAN EPILEPSY SOCIETY (AES)

Publications

Epilepsy Currents, AES News

Meetings

Annual Meeting and Biennial North American Regional Epilepsy Congress

Summary of Activities in 2011 and 2012

  • The American Epilepsy Society held Annual Meetings in December (Baltimore, MD in 2011 and San Diego, CA in 2012). The 2012 meeting was the 4th Biennial North American Regional Epilepsy Congress. Both meetings were very well attended and provided many thought-provoking sessions. All of the presentations from the AES Annual Meetings are available on the AES website. (http://www.aesnet.org/go/professionaldevelopment/ educational-opportunities/archivedaes- symposia)
  • The Society celebrated its 75th Anniversary in 2011 with a special event at the 65th Annual Meeting in Baltimore, MD in December of 2011
  • An ILAE Symposium, organized in cooperation with the North American Commission has been added to the Annual Meeting schedule and will be held each year
  • Participated in the development of the Institute of Medicine’s report: Epilepsy Across the Spectrum: Promoting Health and Understanding. Coordinating efforts of the Vision 20-20 group to accomplish the recommendations
  • The Society maintains its accreditation from the ACCME to provide CME and also provides CE for nurses and pharmacists at its Annual Meeting
  • The web-based member database and a membersonly professional networking site help make finding information and exchanging ideas easier for members
  • AES cosponsored the Partners Against Mortality in Epilepsy conference in Chicago, IL in June of 2012
  • AES cosponsored the Translational Workshop at the European Commission Congress in London, UK in September of 2012.

Research Funding

The Society raises money to fund research through its Annual Meeting, fundraising campaigns and through partnerships with other funding organizations. In addition it recognizes researchers worldwide for their work in all aspects of epilepsy. Recently, the Society presented awards to Simon Shorvon, MA, MD, FRCP (UK), Martin J Brodie, MD (UK) for lifetime contributions and accomplishments in the field of epilepsy, Richard Miles, PhD (France) for Basic Science and Renzo Guerrini, MD, (Italy) for Clinical Science.

The Society funded in 2011 (10/11)

  • AES-funded Postdoctoral Research Training Fellowships (3)
  • Postdoctoral Research Training Fellowship funded by the Lennox Trust Fund (1)
  • AES and Lennox Trust Fund Pre-doctoral Fellowships (4)
  • Research Initiative Program (1)
  • Research Infrastructure Program (2)
  • AES-sponsored Workshops (4)
  • Research Recognition Awards (2)
  • Targeted Pediatric Partnership (1)
  • Clinical Research Training Fellowship/Susan Spencer Fellowship (1)

The Society funded in 2012 (11/12)

  • AES-funded Postdoctoral Research Training Fellowships (3)
  • AES and Lennox Trust Fund Predoctoral Fellowships (4)
  • Research Initiative Program (1)
  • Research Infrastructure Program (2)
  • AES-sponsored Workshops (3)
  • Research Recognition Awards (2)
  • Targeted Pediatric Partnership (1)
  • AES and Grass Foundation Young Investigators Travel Awards (8)

Educational Activities

  • The educational pinnacle of the year is the Society’s Annual Meeting, held in December, which provides a myriad of educational opportunities for clinicians, researchers and other epilepsy professionals. In addition, the Society repurposes all of the sessions from Annual Meetings and puts them on the website (www.aesnet.org) free of charge. The Meeting features one symposium presented in Spanish.
  • In addition to many archived programs, the Society also offers web training sessions free of charge. There are two interactive web programs currently available. (http://www.aesnet.org/go/professionaldevelopment/ education)
  • Most of the materials in the online Epilepsy Education program have been translated into Spanish. This is a resource for teachers and
    students consisting of PowerPoint slides and text explaining basic aspects of epilepsy. The materials are available to everyone on the AES website (http://www.aesnet.org/professionaldevelopment/ educational-opportunities/epilepsyeducation- program/epilepsy-education-program).

Activities in Conjunction with Local IBE Affiliate

  • The AES leadership and staff participated annually, the Epilepsy Foundation’s National Walk For Epilepsy, raising money for research • Several members also participated in the Epilepsy Foundation’s Public Policy Institute, learning about advocating to Congress and participated in visits to congressional people. The Society is participating in the web-based advocacy efforts of the Epilepsy Foundation
  • Many members are active in national and state Professional Advisory Boards of the Epilepsy Foundation
  • Several research funding vehicles are partnerships with the Epilepsy Foundation.

Future Plans

  • Launching a Learning Management System on our website as a service to members and to help with Maintenance of Certification and Board Recertification requirements
  • Launching EMUCaring, an online education program on safety in the epilepsy monitoring unit
  • Taking over the Fellows programs that had been run in conjunction to our Annual Meeting which means bringing at least 50 young investigators to the meeting each year.

Officer Election Date

December 2012

Report By

M Suzanne C Berry, MBA, CAE

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LIGA URUGUAYA CONTRA LA EPILEPSIA (LUCE)

Publications

Revista Uruguaya de Epilepsia 2011;20(1)(2)– 2012;21(1)(2)

Meeting

The 2012 Annual Meeting was held in Montevideo on 22 June with Prof Andre Palmini as invited speaker and Dr Pablo Pereda and Rodolfo Ferrando from the local staff of the Epilepsy Surgery Program.

Summary of Activities in 2011 and 2012

Development of an institutional blog, to enhance communication with the general public: http://ligaepi.blogspot.com. It allows download of educational material for professionals and general public, as well as interaction and directly contacting LUCE’s Directive Commission. In addition to our local agenda, members of LUCE participated actively in different ILAE Commissions and activities. Elections were held on 8 September 2012 according to LUCE’s Constitution and Bylaws. The new authorities started 25 September 2012.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

Under the request of the National Unit of Transit Security (UNASEV) we developed updated recommendations for acceptance and renewal of driving licenses in PWE. The LUCE participated in the Stand Up for Epilepsy campaign, with the collaboration of sportmen as Diego Forlán, Diego Lugano and Horacio “Tato” López. Members of LUCE were in the media (written journals, TV, radio), fighting against discrimination through education of the general public. Some patients did, as well, particularly in the context of our Annual Meeting and Anniversary of our Epilepsy Surgery Program. Then, we worked together with a group of patients to develop a session with their active participation, including presentation of the results of their survey on prejudice, discrimination and epilepsy in different areas of our country.

Educational Activities

Besides our Annual Meeting, devoted to epileptologists, neurologists and Neurology residents, LUCE supported the Epilepsy Section of the Neurological Institute providing every resident and postgraduate student with a free copy of some books on epilepsy provided by ALADE members (Elza Márcia Yacubian and Silvia Kochen). Members of LUCE participated in the Course of Epilepsy for Primary Care physicians, organized by the Latin American Commission of ILAE, and held in La Paz, Bolivia, as a parallel activity to the PanAmerican Neurology Congress of the WFN.

Activities in Conjunction with Local IBE Affiliate

Together with AUCLE (IBE affiliate) we could re-launch the Self-Aid Groups, under coordination of psychologists (Lic. Mariela Morales and Ana Bogacz), who are honorary collaborators of both institutions. The Group for patients started in July 2011, while the Group of relatives began on August 2012.

Future Plans

To improve design and content of our blog, including upload of our local journal, Revista Uruguaya de Epilepsia. To initiate a program of migratory courses on epilepsy diagnosis and management devoted to primary care physicians, in different areas of the country. First course planned to be in Melo city, April 2012. To perform an epidemiological project on posttraumatic epilepsy related to car accidents, with particular accent on its causes and preventive measures.

Officer Election Date

8 September 2012

Report By

Patricia Braga

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YUGOSLAV UNION OF LEAGUES AGAINST EPILEPSY (SERBIA AND MONTENEGRO)

Publications

Series of Proceedings:

  • Symptomatic epilepsies through the ages (13th Epilepsy School, 2011)
  • Quality of life in epilepsy (14th Epilepsy School, 2012)
  • 2nd EEG Workshop – Manual (Kragujevac, 2009)

Proceedings: New therapeutic approaches in TSC, Belgrade, 2012

Meetings

  • 8th Congress of Serbian Neurologists (Kopaonik, 29 September – 2 October 2011)
  • Symposium: New therapeutic approaches in Tuberous Sclerosis Complex, Belgrade, 7 July 2012.

Summary of Activities in 2011 and 2012

  • 8th Congress of Serbian Neurologists with international participation (Kopaonik, 29 September - 2 October 2011) including teaching
    course on epilepsies
  • Educational cycle of Epilepsy School courses
  • Educational EEG Workshops
  • Participation to the Project of EURAP. Collaboration with a number of other national ILAE Chapters, especially with regional Leagues
  • Symposium on New therapeutic approaches in TSC, Bedlgrade, 7 July 2012.

Summary of Activities in Relation to Global Campaign in 2011 and 2012

  • Educational and public-awareness activities developed in press and visual media. Lectures on a) Epilepsy and sporting activities b) Stigmatization of school children and adolescents c) difficulties in professional occupation and driving license procedure
  • The 14th Epilepsy School was organized in Sumarice, Kragujevac 9-11 November 2012 and was completely dedicated to the Quality of Life in Epilepsy.

Educational Activities

  • 13th Epilepsy School has taken place in Studenica Monastery, Serbia, 10-12 November 2011
  • 8th Congress of Serbian Neurologists (Kopaonik, 29 September - 2 October 2011) - Teaching course: Differential Diagnosis of Epilepsies CME
  • New therapeutic approaches in TSC, Belgrade, 7 July 2012
  • 14th Epilepsy School, was organized in Sumarice, Kragujevac 9-11 November 2012
  • 2nd EEG Workshop took place in Sumarice, Kragujevac, on 8 November 2012.

Activities in Conjunction with Local IBE Affiliate

No activities of local IBE have been recognized for years. No activities in conjunction with local IBE

Future Plans

  1. 15th Epilepsy School, Monastery Dobrun, Republic of Srpska, September, 2013.
  2. 3rd EEG Workshop, Monastery Dobrun, Republic of Srpska, September, 2013.
  3. 16th Epilepsy School, Morovic, Serbia, November, 2014.
  4. 4th EEG Workshop, Morovic, Serbia, November, 2014.
  5. Summer camp for leisure, sporting activities and friendship of children and adolescents, lasting 10 days (Kopaonik, Serbia) July 2013/2014.
  6. Edition of the publications relating epilepsies, edited by League.
  7. 9th Serbian Neurology Congress, Belgrade, November 2013.
  8. 4th Epilepsy Congress of Serbia and Montenegro– 2014.
  9. Regional Epilepsy Conference, Kopaonik, Serbia, June 2014.

Report By

Prof Dr Nebojsa J Jovic, Chapter President

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