European ILAE objectives and actions

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Magic Triangles
Bermuda Triangle
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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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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-organ
isation Germany / Israel in Berlin 2008
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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 Trainers courses Lusophone
edu Francophone edu Edu for PAMs Etc..
6
Education CEA Action Plan
CEA
Residential Courses Teaching Courses
Year 2006 2007 2008 2009 2010 ?
Residential Course Eilat
Migrating Course Serbia Lithuania
San Servolo International ILAE CEA Co-financing CEA Co-financing CEA Co-financing CEA Co-financing ?
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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
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• 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

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• 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 local economical
• realities and the needs of the countries
• with limited resources

Kyrg
11
Kyrg
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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?

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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
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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

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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, (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

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Education Quality care 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 ..
CEA
BUDGET
BUDGET
Newsletter
EAC
Proposals Evaluations of needs Motivation of
Chapters
Conventions Surveys Others
Sub regional organisation?
Chapters