Chapter Name: Swiss League against Epilepsy (Schweizerische Epilepsie-Liga / Ligue Suisse contre l’Epilepsie)
Report By: Julia Franke
Publications:
Regular publications
Journal “Epileptologie” (Epileptology): One special issue was published in 2019, “Attitudes to epilepsy in Switzerland: Population survey 2018”.
Future plans, see below.
Annual report (German, French)
Continuing presence on Facebook (more than 1,000 subscribers)
Monthly e-newsletter (about 8,800 German-speaking and more than 2,400 French-speaking recipients)
E-Newsletter for doctors, mainly in English (about 5-6 times per year)
New information leaflets/brochures, both printed and online:
- Flyers newly available in English and Bosnian/Croatian/Serbian, for example „What are epileptic seizures and epilepsies“ and „First aid during epileptic seizures“ (English: https://www.epi.ch/en/publications/ )
- New leaflet “Epilepsy and pregnancy” (English, German, French, Italian, Portuguese, Albanian, Bosnian/Croatian/Serbian)
- New leaflet “Causes of epilepsies” (German, French)
- Revised leaflet “Driving with epilepsy” (English, German, French, Italian, Portuguese, Albanian, Bosnian/Croatian/Serbian)
- New leaflet “SUDEP” (German, French, Italian)
- New leaflet “Epilepsy in children” (English, German, French, Italian)
- New brochure “Epilepy surgery” (German, French, Italian)
More new publications:
- “E-book” (PDF/epub file containing all leaflets for tablet computers, German/French)
- SOS cards (emergency cards) now also available in English and Italian
- Leaflet "Possession of firearms and epilepsy" (PDF only)
- Medical certificate templates for international travel (fit for flying, international transport medication for private use)
Summary of Activities:
Annual meetings
2019:
- 11th Joint Meeting of the German, Austrian and Swiss Chapters of the International League Against Epilepsy (ILAE) in Basel, Switzerland. May 8 to 11, 2019.
About 950 participants, 225 from Switzerland. https://www.epilepsie-tagung.de
2020
- The ILAE European Congress on Epileptology was scheduled to take place in Geneva, July 5 to 9, 2020. Due to the pandemic, it had to be postponed to 2022.
Summary of other activities in 2019 and 2020
- Annual Research Recognition Award (CHF 25’000) for the most promising research study in Switzerland in the field of epileptology: https://www.epi.ch/en/improving-the-prospects-of-young-people-with-absence-epilepsy/
- Biannual Hauptmann Award in 2019 (Euro 10’000) in cooperation with the German and Austrian chapter
- Triennual Prize for Best Dissertation in 2019
- Foundation of the Swiss Epilepsy Research Network “SERENE”: https://www.epi.ch/en/research/serene/
- Tissot Medal (honorary prize for special services to Swiss epileptology) to Dr. Günter Krämer, former president of the Swiss League Against Epilepsy
- Revision of guidelines concerning driving with epilepsy
- Three smaller professional events in different cities were held in 2019 as usual; in 2020, only one could take place due to the pandemic
- In 2019, a total of 429 visitors participated in our events for non-professionals in cooperation with Epi-Suisse (IBE chapter); in 2020, only two live events could place, two events were held online
- A short live-action film on “Epileptic seizure: What should you do” was published in 2019 (Swiss German with subtitles in English, German, French, Italian, Albanian and Serbian) , in cooperation with Samariterbund (Swiss Samaritan League): https://www.epi.ch/en/publications/videos/film-e/
- In September 2020, we launched an information campaign “First aid during a seizure” with posters, online ads and the short film: https://www.epi.ch/en/about-epilepsy/key-facts/campaign/ ; it concentrated mainly on Switzerland, but the material was also translated in English and is available for download
- Our website www.epi.ch is updated constantly; most notably, information on “Coronavirus and Epilepsy” was published swiftly, starting in March 2020 (German, French, Italian, later English, Portuguese, Albanian, Bosnian/Croatian/Serbian), and caused a spike in website use
- www.epi.ch now complies with the HONcode standard for trustworthy health information
- We are now also present on LinkedIn
- The League supported the call for a WHO Global Action Plan on epilepsy
- Media activities, especially concerning medication shortages and the first-aid campaign, resulting in several articles, radio and TV features
- Answers to medical questions, about 160-200 questions a year
- Statute update
Elections May 2020
https://www.epi.ch/en/first-female-president-for-epilepsy-league/
As the AGM had to be postponed due to the coronavirus pandemic, the members of the Epilepsy League were given the opportunity to cast their vote by mail.120 of about 800 members participated.
Newly elected:
- President, Prof. Dr. med. Barbara Tettenborn, chairman and head of the Department of Neurology at Kantonsspital St. Gallen (our first female president)
- PD Dr. med. Martinus Hauf, head physician and head of epileptology at Klinik Bethesda in Tschugg
- Prof. Dr. med. Martin Kurthen, senior physician and deputy medical director at the Swiss Epilepsy Clinic (Klinik Lengg) in Zurich
- PD Dr. Dr. med. Frédéric Zubler, senior physician at the Sleep-Wake-Epilepsy Centre (SWEZ) at the University Hospital (Inselspital) in Berne.
Re-elected: Prof. Dr. med. Stephan Rüegg, now past-president; Vice-President, Prof. Dr. med. Andrea Rossetti; treasurer, Mr. Marco Beng. Dr. med. Pamela Agazzi, PD Dr. med. Alexandre Datta, Ms. Noëlle Mercier; Prof. Dr. med. Johannes Sarnthein; Prof. Dr. med. Margitta Seeck, Mr. Urs Sennhauser.
Retired, Prof. Dr. Dr. med. Thomas Grunwald, Dr. med. Anna Maria Hew-Winzeler, Dr. med. Klaus Meyer, Prof. Dr. Dr. med. Kaspar Schindler.
Challenges:
The coronavirus pandemic had a huge influence on our event planning and our everyday work life. Fortunately, a part of the sponsoring funds could be diverted to other projects, such as publications.
The financial situation eased in 2019 thanks to a larger inheritance in favour of the league. Nevertheless, finances remain a challenge as regular income continues to be lower than expenditure.
Future Plans:
- A new, trinational journal with the German and Austrian chapters, in German and English, is yet to replace our journal “Epileptologie”
- Produce several short, easy-to-understand explanatory videos about the most important topics concerning epilepsy, in several languages
- New leaflets, probably concerning epilepsy and nursing; seizure observation
Officer Election Date: Spring 2022
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