EUCARE Political Action Group

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EUCARE Political Action Group

• Hanneke M. de Boer
• Chair

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EUCARE Political Action Group

• EUCARE
• Joint initiative of the International League
  Against Epilepsy and the International Bureau for
  Epilepsy whose goal is to raise the profile of
  epilepsy across Europe through education,
  research and political activity.

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EUCARE Political Action

• Members EUCARE Political Action Group
• Hanneke de Boer (Chair) The Netherlands - GCAE
• Anthanasios Covanis, Greece - IBE
• Andreas Habberstad, Norway - IBE European
  Committee
• Mike Glynn, Ireland - IBE
• Svein Johannessen, Norway ILAE European Comm.
• Cigdem Ozkara, Turkey ILAE uropean Committee
• Administrative support Ann Little

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EUCARE Political Action

• Fonde
• Objective
• Assess clinical social outcomes in people with
  newly-diagnosed epilepsy
• Political Action Group
• Aims
• Raise awareness about epilepsy among
  parlementarians European Parliament
• Establish group of Parliamentary Advocates for
  Epilepsy
• Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Formulate plan develop proposal re. political
  activities

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EUCARE Political Action

• Aims
• Raise awareness about epilepsy among
  parlementarians European Parliament
• Questionnaire on medical and public health
  aspects of epilepsy
• Meeting with parliamentarians
• Establish group of Parliamentary Advocates for
  Epilepsy
• Resolution
• Feature during sessions at international Epilepsy
  Congresses
• Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Promote development of appropriate European
  guidelines
• Develop booklet on examples of good practice
• Promote increase amount of time devoted to
  epilepsy on curriculum medical schools in Europe
• Formulate plan develop proposal re. political
  activities

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EUCARE Political Action

• Aims
• Raise awareness about epilepsy among
  parlementarians European Parliament
• Questionnaire on medical and public health
  aspects of epilepsy
• The number of people with Epilepsy in Europe is
  ..
• The costs of epilepsy in Europe are in excess
  of..
• Seizures can be stopped by medication
  in
• The percentage of people with epilepsy in
  employment is.
• Employers cannot obtain liability insurance for
  staff with epilepsy..
• In order to hold a driving licence in the
  European Union, people with epilepsy must not
  have had seizures for
• The majority of people with epilepsy have a
  learning disability.
• People with epilepsy should not work with
  computers..
• One can die from epilepsy.
• 
  
  

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EUCARE Political Action

• Aims cont.
• Raise awareness about epilepsy among
  parlementarians European Parliament
• Conclusion knowledge about epilepsy among
  parelmentarians and participants IBE Conference
• 
  MEPs Part.
• Knowledge about the condition 80 85
• Number people with epilepsy 35 45
• Costs epilepsy 50 35
• Medication 55 75
• Employment lt 40 55
• Liability insurance 60 65
• Drivers licence 35 60
• Computers 85 90
• Deaths 60 85

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EUCARE Political Action

• Aims cont.
• Establish group of Parliamentary Advocates for
  Epilepsy
• Resolution
• Proposed by John Bowis
• To be circulated to MEPs
• MEPs to be invited to add signature to
  Resolution
• Feature during sessions at international Epilepsy
  Congresses
• Copenhagen
• Marseille

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EUCARE Political Action

• Resolution
• Contents background information
• Epilepsy is the most common serious disorder of
  the brain
• Epilepsy affects men, women and children of all
  ages and races, regardless of social status.
• Epilepsy knows no boundaries, although the scale
  of the problem varies from country to country
  based on local, cultural and economic factors.
• It not only presents people with health problems,
  but also with a wide range of other difficulties
  that can affect every aspect of their lives,
  often imposing substantial physical,
  psychological
• and social burdens on individuals and their
  families
• People with epilepsy may be viewed with
  misunderstanding, suspicion and fear leading
  almost inevitably to stigma.

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EUCARE Political Action

• Resolution cont.
• Contents facts
• Whereas 50,000,000 people in the world have
  epilepsy.
• Whereas 6,000,000 people in Europe have epilepsy
• Whereas 20,000,000 family members are affected by
  the condition.
• Whereas 300,000 new cases of epilepsy occur in
  Europe each year.
• Whereas up to 70 of people with epilepsycould be
  seizure free with appropriate treatment.
• Whereas 40 of people with epilepsy in Europe do
  not receive such treatment.
• Whereas 40 of children with epilepsy will
  encounter difficulty with school work.
• Whereas in Europe 40-60 of people with epilepsy
  are unemployed.

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EUCARE Political Action

• Resolution
• Contents political background
• European Parliament jointly with Council of
  Ministers has significant powers to initiate
  policy and legislation health decisions, it also
  has a remit and competency for health promotion
  under the Treaty of Amsterdam.
• Parliament plays important role in assessing
  health impact
• all European Member state policies.
• Health promotion Parliament, and the European
  Union as a whole, should offer real opportunity
  to influence education employment practice.
• European Union has already invested in several
  neurological disorders but not yet in most
  common serious one, epilepsy, despite 6 million
  people in Europe having the condition, which
  costs over 20 billion euro per annum.

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EUCARE Political Action

• Resolution
• Call to Action
• Six million people with epilepsy in Europe call
  for the right to receive appropriate treatment
  and care for their condition.
• Six million people with epilepsy in Europe want
  to go to school, want to get a job and want to
  develop relationships just like every other
  European.
• Six million people with epilepsy in Europe have
  the right to appropriate information about their
  condition.
• Six million people with epilepsy in Europe want
  the misconceptions and prejudice and the
  subsequent stigma to be eliminated.
• The European Parliament already has a remit
  covering health promotion. NOW is the time to
  raise the profile of epilepsy within the European
  Union and to work for changes in policy making
  related to people with epilepsy.

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EUCARE Political Action

• Resolution
• Call to Action cont.
• 6 MILLION PEOPLE WITH EPILEPSY call on the
  European Parliament to provide legislation to
• SECURE availability, accessibility and
  affordability of appropriate treatment
• PROTECT people with epilepsy from discrimination
  and stigma
• ENSURE equal job opportunities for people with
  epilepsy
• REDUCE the socio-economic burden of epilepsy.

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EUCARE Political Action

• Resolution cont.
• Call to Action
• 6 MILLION PEOPLE WITH EPILEPSY call on YOU to
• INCREASE investment in epilepsy research
• IMPROVE awareness and understanding of epilepsy
• INTRODUCE legislation to protect people with
  epilepsy against inappropriate switching of their
  anti-epileptic drugs (AEDs) and any other form of
  discrimination.

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EUCARE Political Action

• PAG Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Promote development of appropriate European
  guidelines
• Develop booklet on examples of good practice
• Promote increase amount of time devoted to
  epilepsy on curriculum medical schools in Europe
• Formulate plan develop proposal re. political
  activities

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EUCARE Political Action

• PAG Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Promote development of guidelines
• Organise workshop on the development and
  implementation of European guidelines for
  broadcasted materials and video games
• In place UK (Guidelines for Flashing Images
  and Regular Patterns)
• Japan

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EUCARE Political Action

• Organise workshop on the development and
  implementation of European guidelines for
  broadcasted materials and video games
• Participants
• Experts in the field of photosensitivity and
  epilepsy
• Experts in the broadcasting and videogame
  business
• Representation of European IBE/ILAE committees
• Members European Parliament
• Experts in developing European guidelines
• Time schedule
• May - June 2009

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EUCARE Political Action

• PAG Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Develop booklet on examples of good practice
• Driving licences legislation Japan, India, EU
• Photosensitivity Japan, UK
• Epilepsy Care programme Chili
• Drugsbanks Chile, Uganda
• Anti Discrimination legislation Colombia
• Epilepsy Legislation Argentina
• MRI Directive EU
• Anti-Marriage legislation India

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EUCARE Political Action

• PAG Objectives
• Identify issues to be addressed by EUCARE within
  political arena
• Promote increase amount of time devoted to
  epilepsy on curriculum medical schools in Europe
• First step
• Establish amount of time on curriculum medical
  schools in Europe devoted to epilepsy
• Gen. Med. Child Psych. Adult Psych.
  Ped. Adult Neur.
• Greece 1-2 hrs/yr 1 hour/yr
  ?? 1-2 hrs/yr 4 months
• Ireland 1-2 hrs/yr ?? ½
  day/yr ?? extensive
• Netherlands 1 hrs/yr ?? 1
  day/yr ?? 1 day
• More info to be collected

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EUCARE Political Action

• PAG Objectives
• Formulate plan develop proposal re. political
  activities
• Potential topics
• Promote development of (appropriate) guidelines
• HELP!!!!!!!!!!!!!!!
• Increase amount of time on curriculum medical
  schools in Europe devoted to epilepsy
• HELP!!!!!!!!!!!!!!!
• Develop handbook of good practice
• HELP!!!!!!!!!!!!!!!
• ...

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EUCARE Political Action
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EUCARE Political Action

• Concerted Action for Change
• We know the problems people with epilepsy have to
• face
• today
• Lets talk about the solutions

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EUCARE Political Action