Transcript European ILAE objectives and actions
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
European Congresses on Epileptology ECE
• • • • • •
Oporto 1994 Den Hague 1996 Warsaw 1998 Florence 2000 Madrid 2002 Vienna 2004
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Helsinki 2006 Post Congress Satellite in St Petersburg Co-organisation Germany / Israel in Berlin 2008
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Berlin 2008
• •
?? 2010 ?????? 2012
Travel Bursaries for ECE:
2002-2004-2006 Yugoslavia Ukraine UK Turkey Sweden Spain Serbia & Montenegro Russia Romania Portugal Poland Netherlands Moldova Macedonia Lithuania Italy Israel Hungary Germany Georgia France Finland Estonia Czech Republic Belgium Belarus Austria 0 5
# 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
10 15 20
Education: CEA Action Plan
CEA
Residential Courses Teaching Courses Distant Education Trainer’s courses Lusophone edu Francophone edu Edu for PAMs Etc…..
Education: CEA Action Plan
CEA
Residential Courses Teaching Courses
Year Residential Course Migrating Course San Servolo International ILAE
2006 CEA Co financing 2007 Eilat 2008 Serbia Lithuania CEA Co financing CEA Co financing 2009 CEA Co financing 2010 ?
?
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
• 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
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 diseases S. 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)
Regional Organisation
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Stimulate Integration
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Support collaborative projects, regional or sub-regional initiatives
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Taking into account the local economical realities and the needs of the countries with limited resources + Kyrg
+ Kyrg
Scientific Cooperation / Research
• Supportive role in large scale collaborative studies – EURAP (pregnancy registry) – EU calls for Research (FP 6 th , FP 7 th ) • Participation to the FONDE study (EUCARE) • AEDs Trials?
• Genetics, Epidemiology, Tissue banks • Fellowships?
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
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 7 th 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
Commission on European Affairs
• • • • • • • • • Milda Endziniene (Lithuania) Alla Guekht,
EAC Chair
,(Russia) Cigdem Ozkara,
CEA Secretary
, (Turkey) Bettina Schmitz (Germany) Michel Baulac,
CEA Chair
, (France) Meir Bialer,
CEA Treasurer
, (Israel) Peter Halasz (Hungary) Svein Johannessen,
EAC secretary,
Frederico Vigevano (Italy) (Norway) 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, S Johannessen, M Endziniene, M Bialer • Scientific collaboration / Research: P Halasz, C Ozkara, F Vigevano • Communication, Global Campaign: C Ozkara, S Johannessen
Education Quality care
CEA
Regional Inter reg.
initiatives Congress Scientific cooperation Research Communication Liaison IOC / SAC
Written rules, statutes Evaluation (Bursaries, fellowships)
Centralized
Scientific cooperation Education (liaison ILAE commission) Edu courses EMEA / CEA Regional Inter reg.initiatives
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Newsletter Conventions Surveys Others… EAC Proposals Evaluations of needs Motivation of Chapters Sub regional organisation?