EUCARE stands for European Concerted Action and Research in Epilepsy. The project was inaugurated in May 1998 in response to the publication of a paper produced by the Commission on European Affairs (CEA) of the International League Against Epilepsy (ILAE), which set out appropriate standards of epilepsy care across Europe. The main priority was to produce a political report on the status of epilepsy care and treatment across Europe.
In order to expand its scope and impact, the International Bureau for Epilepsy (IBE) was invited to become a partner in EUCARE, given the focus of IBE as a lay umbrella organisation interested in the social aspects of epilepsy and in an improved quality of life for those affected by epilepsy.
European White Paper on Epilepsy
In tandem with the creation of EUCARE, in 1998 leaders of European professional and lay organisations, representatives of the WHO, and health experts came together under the auspices of the ILAE/IBE/WHO Global Campaign against Epilepsy to devise and adopt a European Declaration on Epilepsy. As part of the Declaration, the Governments of Europe were urged to support the publication of a White Paper as a detailed public-health statement on epilepsy. This challenge was taken up by EUCARE, which brought together experts from 18 European countries to produce the document.
The European White Paper on Epilepsy was launched at the European Parliament in Brussels on March 22, 2000. A year later, in November 2001, John Bowis, a Member of the European Parliament, announced the formation of a political lobby group called Parliamentary Advocates for Epilepsy. More than 40 Members of the European Parliament from all parties have pledged their association with this initiative, and representatives from WHO participated in its launch.
FONDE is created
EUCARE became a joint initiative of ILAE and IBE in October 2003 and the projects structure was further expanded with the creation of the Scientific Advisory Board.
After the publication of the White Paper, discussions began to develop a new EUCARE programme, the central project of which would be An observational study of pharmacological outcomes and lifestyle consequences of newly diagnosed epilepsy in different countries of Europe (FONDE). More than 100 EUCARE centres that diagnose, investigate, manage, and follow up patients will participate. The aim of the programme will be to link patient outcomes with educational, scientific, and public-policy projects that will be designed and led by members of the current Scientific Advisory Board. The programme is run and administered by the EUCARE Management Group, which reports to the Joint Executive Committees of ILAE and IBE.
Visit the EUCARE website at www.eucare.org for further information on this initiative.