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
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Oporto
1994
Den Hague 1996
Warsaw
1998
Florence 2000
Madrid
2002
Vienna
2004
• Helsinki
2006
Post Congress Satellite in St Petersburg
• Berlin
2008
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2010
2012
Co-organisation Germany / Israel in Berlin 2008
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
# 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
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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
2006
2007
2008
Residential
Course
Eilat
Migrating
Course
Serbia
Lithuania
CEA Cofinancing
CEA Cofinancing
San Servolo
International
ILAE
CEA Cofinancing
2009
2010 ?
CEA Cofinancing
?
Quality / Availability of Care / AEDs
• Discussion group with the
European Medecine Agency
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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
• Stimulate Integration
+ Kyrg
• Support collaborative projects, regional
or sub-regional initiatives
• Taking into account the local economical
realities and the needs of the countries
with limited resources
+ Kyrg
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?
Communication
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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 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
Commission on European Affairs
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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, (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, 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
Regional
Inter reg.
initiatives
Congress
Scientific
cooperation
Research
Communication
Liaison
IOC / SAC
BUDGET
CEA
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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Conventions
Surveys
Others…
EAC
Proposals
Evaluations of needs
Motivation of Chapters
Sub regional organisation?
Chapters
Newsletter