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European ILAE objectives and actions

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Title: European ILAE objectives and actions


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-organ
isation 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 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 ?
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 local economical
  • 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, 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

16
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
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