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Bermuda Triangle

Magic Triangles………. Bermuda Triangle. Commission on European Affairs Report on Activities (July 2006). Rules of procedures. Finances. European Congress ECE. Regional Organisation. Education. Quality - Availability of Care / AEDs. Scientific cooperation / Research. Communication.

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Bermuda Triangle

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  1. Magic Triangles……… Bermuda Triangle

  2. Commission on European Affairs Report on Activities (July 2006) Rules of procedures Finances European Congress ECE Regional Organisation Education Quality - Availability of Care / AEDs Scientific cooperation / Research Communication

  3. European Congresses on Epileptology ECE • Oporto 1994 • Den Hague 1996 • Warsaw 1998 • Florence 2000 • Madrid 2002 • Vienna 2004 • Helsinki 2006 • Berlin 2008 • ?? 2010 • ?????? 2012 Post Congress Satellite in St Petersburg Co-organisation Germany / Israel in Berlin 2008

  4. Travel Bursaries for ECE: 2002-2004-2006 • # 50 Travel bursaries per ECE • Criteria: • Working in a European Institution • Under 40 years • First author of an accepted abstract • Includes: • -Complimentary Registration • -3 Nights Accommodation • -€250 towards travel

  5. Education: CEA Action Plan CEA Residential Courses Teaching Courses Distant Education Trainer’s courses Lusophone edu Francophone edu Edu for PAMs Etc…..

  6. Education: CEA Action Plan CEA Residential Courses Teaching Courses

  7. Quality / Availability of Care / AEDs • Discussion group with the European Medecine Agency • Rare Diseases Task Force in liaison with the EU Commission / Orphan Drug Programmes • Status Epilepticus: • Workshop on European Guidelines for the treatment of SE (London, April 2007 ) • EFNS Main Session in Brussels (August 2007) In Liaison with the ILAE Commission on Therapeutic Strategies

  8. Collaboration with the Rare Diseases Task Force in liaison with the EU Commission • Identifying the epileptic disorders that fulfill the definition of rare diseases • Ex: epileptic encephalopathies, PME, Rasmussen, etc • Developing the concept of Centres of Reference • Communication actions (website, database ORPHANET, Journal or Rare diseases) • Optimizing the continuity of care between paediatrics and adult neurology units • Promoting innovative therapies / Orphan drugs

  9. Tuesday July 4th 07.30-09.00 Orphan Drug Symposium • The concept of rare or orphan diseases in epilepsy Baulac, M (France) • Review of the EU orphan drug program - applicability to epileptic diseasesS. del Signore (EMEA Representative) • Overview of brivaracetam for progressive myoclonus epilepsies (UCB)von Rosenstiel, P (Belgium) • Overview of stiripentol for SMEI (Biocodex)Chiron, C (France)

  10. Regional Organisation • Stimulate Integration • Support collaborative projects, regional • or sub-regional initiatives • Taking into account the localeconomical • realities and the needs of the countries • with limited resources + Kyrg

  11. + Kyrg

  12. Scientific Cooperation / Research • Supportive role in large scale collaborative studies • EURAP (pregnancy registry) • EU calls for Research (FP 6th, FP 7th) • Participation to the FONDE study (EUCARE) • AEDs Trials? • Genetics, Epidemiology, Tissue banks • Fellowships?

  13. Communication • ILAE website • EUCARE (Action at the EU Parliament) • Global Campaign • Societies (EFNS, EPNS) • IBE Communication with the Chapters Reinforce the role of: the European Advisory Concil (EAC) the Chapter Convention

  14. CEA Bursaries for Chapter Conventions • Initiated in Vienna in 2004 to ensure participation of Chapter Delegates in the European Chapter Convention • 16 people from Kazakhstan, Croatia, Turkey, Ukraine, Macedonia, Hungary, Yugoslavia, Russia, Azerbaijan, Armenia, Georgia, Bulgaria, Moldova, Slovenia, Latvia, Lithuania, Estonia assisted • Programme expanded to assist Chapters on 2 levels for the 7th ECE in Helsinki: • Special bursary offered to one representative of 22 Central & Eastern European Chapters (based on GNP figures of the World Bank) – comprising registration, accommodation & travel support • One other registered delegate was offered accommodation support for 1 night in order to facilitate attendance at the Chapter Convention

  15. Commission on European Affairs • Milda Endziniene (Lithuania) • Alla Guekht, EAC Chair,(Russia) • Cigdem Ozkara, CEASecretary, (Turkey) • Bettina Schmitz (Germany) • Michel Baulac, CEAChair, (France) • Meir Bialer, CEATreasurer, (Israel) • Peter Halasz (Hungary) • Svein Johannessen, EAC secretary, (Norway) • Frederico Vigevano (Italy) Peter Wolf EC Members • Working Groups • Education: M Endziniene, M Bialer, B Schmitz, A Guekht, P Halasz, P Wolf • Rules: F Vigevano, M Bialer, S Johannessen • Relationships with European Organisations, EMEA,..: M Baulac, M Bialer, A Guekht • Cooperation / Regional initiatives: A Guekht, SJohannessen, M Endziniene, MBialer • Scientific collaboration / Research: P Halasz, COzkara, FVigevano • Communication, Global Campaign: C Ozkara, S Johannessen

  16. IOC / SAC Written rules, statutes Evaluation (Bursaries, fellowships) Centralized Scientific cooperation Education (liaison ILAE commission) Edu courses EMEA / CEA Regional Inter reg.initiatives …….. BUDGET CEA BUDGET Newsletter EAC Proposals Evaluations of needs Motivation of Chapters Conventions Surveys Others… Sub regional organisation? Chapters

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