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Global Campaign against Epilepsy Report

Jerome Engel, Jr

Commission Members
Hanneke de Boer (Co-chair)
Heemstede, The Netherlands

Jerome Engel, Jr. (Co-chair)
California, USA

Leonid Prilipko
Geneva, Switzerland

Aims

The Global Campaign against Epilepsy is a joint project among the International League Against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and the World Health Organisation (WHO). All three organisations provide substantial financial support for campaign activities. It is managed by the Campaign Secretariat. The Global Campaign against Epilepsy was organized to bring epilepsy “out of the shadows,” and assists governments worldwide to ensure improvement in diagnosis, treatment, prevention, and social acceptability of epilepsy.

Achievements prior to July 2003

The Global Campaign has been working since 1997 to raise general awareness and understanding of epilepsy, and to support departments of health in identifying needs and promoting education, training, treatment, services, research, and prevention in their countries. Specific projects include:

  1. the creation of regional declarations on epilepsy in each of the WHO regions, to produce infor mation on epilepsy for policymakers, incorporate epilepsy care into national health plans, facilitate the establishment of national organizations of professionals and lay persons who are dedicated to promoting the well-being of people with
    epilepsy, and generate more detailed regional reports; and
  2. the organisation of demonstration projects that illustrate effective practice in the provision of epilepsy care, particularly in an effort to reduce the treatment gap for people with epilepsy in countries with emerging economies.

Commission Activities July 31, 2003 to June 30, 2004

A Global Campaign strategic planning meeting was held in Basel, Switzerland, in February 2003. During the past year, in addition to several technical consultative meetings, and meetings with regional advisors, there were Global Campaign conferences in Cairo, Egypt; Moscow, Russia; and Troina, Italy; and Global Campaign sessions at numerous other meetings and congresses. The demonstration project in China is almost completed; projects are underway in Senegal, Zimbabwe, Argentina, Brazil, and Pakistan, and have been proposed in Georgia, Kenya, and on the Navajo Indian reservation in the U.S. Questionnaires on country resources have been distributed in preparation for an Atlas on Country Resources for Epilepsy, intended for publication by August 2005. A grant has been obtained from the U.S. National Institutes of Health to carry out a study on reducing stigma of epilepsy in Vietnam and China, and major financial support has been received from Sanofi-Synthelabo specifically for work in Africa, and from EPICADEC for bottom-up projects in countries with emerging economies.

Recent publications in peer-reviewed journals include:

Aziz H. Country Example within the Framework of the Campaign. Epilepsia 2003; 44, (Suppl 8): 25

Boer H.M. de. The African Commission and its links with the ILAE/IBE/WHO Global Campaign Against Epilepsy. Epilepsia 2003, 44, (Suppl 8): 33

Boer H.M. de. The Global Campaign Against Epilepsy as a Model for Raising Awareness. Epilepsia 2003, 44, (Suppl 8): 24

Boer H.M. de, Engel J. Jr., Prilipko L.L. The Global Campaign at a glance: A Progress Report. Epilepsia 2003; 44, (Suppl 8): 24

Diop A.G., Boer H.M. de, Mandlhate C., Prilipko L.L. The Global Campaign against Epilepsy in Africa. Acta Tropica 2003; 87: 149-59

Engel, J. Jr. Bringing epilepsy out of the shadows. Neurology 2003; 60: 1412

Meinardi H. Demonstration Projects in Africa. Epilepsia 2003, Vol 44, (Suppl 8): 25

Ndoye N.F. Prevalence Rate and Treatment Gap in the Pikine (Senegal) Demonstration Project Site of the Global Campaign Against Epilepsy. Epilepsia 2003; 44, (Suppl 8):125

Pachlatko C. Twinning Partnership: Visible Benefits within the Framework of the Global Campaign. Epilepsia 2003; 44, (Suppl 8): 25

Pahl K. Regional Report on Epilepsy in Africa: An awareness-raising tool. Epilepsia 2003; 44, (Suppl 8): 25

Sander J.W. Progress Report on the Demonstration Projects. Epilepsia 2003, 44, (Suppl 8): 25

Sow A.D., Gueye C.S.K. Use of Various Methods to Increase Awareness of Epilepsy at Pikine (Senegal) in the Context of the Demonstration Project of the Global Campaign Against Epilepsy. Epilepsia 2003; 44, (Suppl 8):195

Wang W.Z., Wu J.Z., Wang D.S., Dai X.Y., Yang B., Wang T.P., Yuan C.L., Scott R.A., Prilipko L.L., Boer H.M. de, Sander J.W. The prevalence and treatment gap in epilepsy in China: an ILAE/IBE/WHO study. Neurology 2003; 60: 1544-545

Upcoming Activities

Regional reports are being prepared for each of the WHO regions. Fundraising activities, including additional grant applications, are in progress. A strategic planning meeting will be planned for 2005 to set the goals and objectives for the next phase of the Global Campaign.

Jerome Engel, Jr.
Co-chair

 

 

Hanneke de Boer

 
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