EUCARE Political Action Group

1. EUCARE Political Action Group Hanneke M. de Boer Chair

2. 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.

3. 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

4. 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

5. EUCARE Political Action • Raising awareness • Questionnaire • Meeting with parliamentarians

6. 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

7. 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?

8. EUCARE Political Action • “medical aspects”

9. EUCARE Political Action Number of people with epilepsy in Europe 6.000.000 40.000.000 Europeans history of seizures

10. EUCARE Political Action • Costs of epilepsy in Europe • € 24 billion

11. EUCARE Political Action • Seizure-free on medication • 60-70%

12. EUCARE Political Action • Percentage in employment • 40-60%

13. EUCARE Political Action • Employers cannot obtain liability insurance for staff with epilepsy • Insurance obtainable • No extra premiums • PWE no extra risk

14. EUCARE Political Action • Driving licence: no seizures • UK, Ireland, Netherlands 12 months • Sweden 24 months EU Experts recommendation: 12 months

15. EUCARE Political Action • People with epilepsy should not work with computers 7% photosensitive Gadgets available

16. EUCARE Political Action • One can die from epilepsy • Excess mortality: - 2-3 times general population - Young people - Preventable

17. 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 < 40% 55% • Liability insurance 60% 65% • Drivers licence 35% 60% • Computers 85% 90% • Deaths 60% 85%