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 ILAE/IBE supported by
  unrestricted educational grant from UCB
• EUCARE mission raise profile of epilepsy across
  Europe through education, research and political
  action.

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EUCARE Political Action

• Members EUCARE Political Action Group
• Hanneke de Boer (Chair) The Netherlands - GCAE
• Anthanasios Covanis Greece - IBE
• Peter Dahlqvist Sweden - IBE European Committee
• Mike Glynn Ireland - IBE
• Svein Johannessen Norway ILAE European Comm.
• Cigdem Ozkara Turkey ILAE uropean Committee
• Administrative support Karen Lee-Donaldson

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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

• Raising awareness
• Questionnaire
• Meeting with parliamentarians

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EUCARE Political Action

• Questionnaire
• 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
• 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

• Questionnaire
• What is your gender?
• What is your age?
• Which country are you from?
• What are your reasons for attending this
  conference?

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EUCARE Political Action

• medical aspects

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EUCARE Political Action

• Number of people
• with epilepsy in
• Europe
• 6.000.000
• 40.000.000 Europeans history of seizures

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EUCARE Political Action

• Costs of epilepsy in Europe
• 24 billion

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EUCARE Political Action

• Seizure-free on medication
• 60-70

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EUCARE Political Action

• Percentage in employment
• 40-60

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EUCARE Political Action

• Employers cannot obtain liability insurance for
  staff with epilepsy
• Insurance obtainable
• No extra premiums
• PWE no extra risk

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EUCARE Political Action

• Driving licence no seizures
• UK, Ireland,
• Netherlands
• 12 months
• Sweden
• 24 months
• EU Experts recommendation 12 months

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EUCARE Political Action

• People with epilepsy should not work with
  computers
• 7 photosensitive
• Gadgets available

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EUCARE Political Action

• One can die from epilepsy
• Excess mortality
• - 2-3 times general
• population
• - Young people
• - Preventable

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EUCARE Political Action

• Conclusion knowledge about epilepsy
• 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