March 2001
From Ketchum
European Parliament calls for action in epilepsyEuropean Parliament, Brussels - 22 March, 2001 - Today experts in epilepsy called upon members of the European Parliament, the public and the medical community to share their knowledge and unite in action to improve the lives of the six million people with epilepsy in Europe2, with the launch of the European White Paper on Epilepsy. Eradication of Stigma, Discrimination in the Workplace, and Inadequate Research Funding were cited as three key focus areas requiring rapid improvement across Europe. The White Paper on Epilepsy, supported by Mr John Bowis MEP in conjunction with EUCARE (EUropean Concerted Action and Research in Epilepsy), an educational initiative from UCB aimed at raising the profile of epilepsy across Europe, has been produced in a timely manner to take advantage of the European Parliament's new remit for Public Health. The White Paper has been created by EUCARE in partnership with the Commission on European Affairs of the International League Against Epilepsy (ILAE) in support of the WHO-led epilepsy 'Out of the Shadows' Campaign - which has recently launched Phase II of its Campaign. Epilepsy is the most common serious brain disorder in every country1, and yet still does not receive the attention it deserves. Mr John Bowis, MEP for London, host of the White Paper launch meeting in parliament and a campaigner for improved epilepsy care, states: 'This initiative is long overdue and provides us with the opportunity to focus our minds on what can and needs to be achieved for those with epilepsy. I cannot stress enough the urgency of action. Everyone, regardless of position in society, can affect the change outlined in this White Paper on Epilepsy.' John Bowis continues: 'I am demonstrating my personal commitment by setting up 'Parliamentary Advocates for Epilepsy' a group of key MEPs specifically dedicated to bringing epilepsy to the forefront of parliamentary health issues, campaigning to improve existing legislation - particularly within the workplace. I urge you to follow suit and take up your role in this bid for change.' Epilepsy can affect anyone - it has no age, racial, professional or geographical bounds. It is estimated that 15 million people in Europe will have epilepsy at some time in their life2. The real burden of epilepsy cannot be quantified - not only does it have a huge economic impact, costing Europe an estimated 20 billion ECU every year2, but epilepsy also has profound physical, psychological, and social consequences on society. Professor Martin Brodie, Chair of Commission on European Affairs, and Director, Epilepsy Unit, Western Infirmary, Scotland, comments that: 'The stigma associated with epilepsy is often harder to live with than the condition itself, impacting on many aspects of life, for example, employment. For years epilepsy has been ignored, and I believe this European White Paper on Epilepsy has come at the perfect time. Epilepsy remains notoriously underfunded and misunderstood. This is not a call 'for' action, but a call 'to' action. Everyone, whether or not they are currently involved in the epilepsy agenda should pick up the banner and support this campaign.' The White Paper on Epilepsy is intended to be a platform on which local epilepsy programmes can be built. The three key recommendations highlighted for change have a European focus and are achievable goals based upon the public health remit of the European Parliament. John Bowis continues, 'For maximum impact, the White Paper must be taken up at local country level where specific areas needing improvement must be identified. We hope that the White Paper can act as a springboard from which local action plans can be developed in accordance with their needs.' For further information, to speak with an opinion leader/case study or to access additional documentation, please contact: For further information on EUCARE, please log on to the website or contact: Karen Donaldson Website: www.EUCARE.be
Tel: 32-2-559-9906
[email protected] Notes to Editors
White Paper
A White Paper is a statement on a particular topic, together with appropriate recommendations for political action. The European White Paper on Epilepsy has been developed by 37authors from 18 countries across Europe. EUCARE (EUropean Concerted Action and Research in Epilepsy)
EUCARE was established in 1998 by UCB Pharma, a Belgian pharmaceutical and chemical company which operates globally. EUCARE is a third party organisation dedicated to raising the profile of epilepsy, the most common serious brain disorder, through educational and political actions. Their aim is to advance the efforts being made to relieve the impact of the condition on the individual and their family across Europe. Activities are guided by a committee of international experts, and are undertaken from an objective standpoint. ILAE - International League Against Epilepsy
The ILAE is the international organisation of healthcare professionals in the field of epilepsy care or research in epilepsy. The objectives of the League are to advance and disseminate knowledge concerning the epilepsies throughout the world; to encourage research about the epilepsies; to promote prevention, diagnosis, treatment, advocacy and care for persons suffering from these disorders; and to improve education and training in the field of the epilepsies. Commission on European Affairs of the International League Against Epilepsy
The Commission on European Affairs, currently chaired by Professor Martin Brodie, was set up in 1993 to stimulate and coordinate all aspects of epileptology across Europe and has 12 members. It has four subcommissions which deal with specific aspects of the European agenda. The Commission reports to the executive of the International League Against Epilepsy and organises biannual European epileptology congresses - the most recent held in October 2000 with more than 3000 delegates attending. IBE - International Bureau for Epilepsy
The IBE is an international body of lay epilepsy organisations, clinics and individuals dedicated to the social aspects of epilepsy. The goal of the IBE is to improve the quality of life of all adults and children with epilepsy. WHO - World Health Organisation
The WHO is a specialised agency of the United Nations. WHO promotes technical co-operation for health among nations, carries out programmes to control and eradicate disease and strives to improve the quality of human life. 'Out of the Shadows' Global Campaign against Epilepsy
The Global Campaign against Epilepsy is a joint initiative between the ILAE, IBE and WHO, to improve the acceptability, treatment, services and prevention of epilepsy world-wide. The Campaign includes international, regional and national components, which are interrelated. References
1. Brodie MJ et al, 1997. Commission on European Affairs: Appropriate standards of epilepsy care across Europe. Epilepsia 38 : 1245-1250. 2. European Declaration on Epilepsy, 25 October 1998. Issued by the International Bureau for Epilepsy, the World Health Organisation and the International League Against Epilepsy.
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