EUCARE Political Action Group Hanneke M de Boer

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EUCARE Political Action Group Hanneke M. de Boer Chair

EUCARE Political Action Group Hanneke M. de Boer Chair

EUCARE Political Action Group • EUCARE: joint initiative ILAE/IBE supported by unrestricted educational grant

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.

EUCARE Political Action Members EUCARE Political Action Group: • • • Hanneke de Boer

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

EUCARE Political Action • Fonde – Objective: assess clinical + social outcomes in people

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

EUCARE Political Action • Raising awareness – Questionnaire – Meeting with parliamentarians

EUCARE Political Action • Raising awareness – Questionnaire – Meeting with parliamentarians

EUCARE Political Action • Questionnaire: – – – The number of people with Epilepsy

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

EUCARE Political Action • Questionnaire: – What is your gender? – What is your

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?

EUCARE Political Action • “medical aspects”

EUCARE Political Action • “medical aspects”

EUCARE Political Action Number of people with epilepsy in Europe 6. 000 40. 000

EUCARE Political Action Number of people with epilepsy in Europe 6. 000 40. 000 Europeans history of seizures

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

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

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

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

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

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

EUCARE Political Action • Employers cannot obtain liability insurance for staff with epilepsy •

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

EUCARE Political Action • Driving licence: no seizures • UK, Ireland, Netherlands 12 months

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

EUCARE Political Action • People with epilepsy should not work with computers 7% photosensitive

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

EUCARE Political Action • One can die from epilepsy • Excess mortality: - 2

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

EUCARE Political Action • Conclusion knowledge about epilepsy – – – – – Knowledge

EUCARE Political Action • Conclusion knowledge about epilepsy – – – – – Knowledge about the condition Number people with epilepsy Costs epilepsy Medication Employment Liability insurance Drivers licence Computers Deaths 80% 35% 50% 55% < 40% 60% 35% 85% 60% 85% 45% 35% 75% 55% 60% 90% 85%