EUCARE was inaugurated in May 1998 as a response to the publication of a paper produced by the Commission on European Affairs (CEA) of the International League against Epilepsy (ILAE) setting out appropriate standards of epilepsy care across Europe. EUCAREs objectives are to develop strategies for improving the understanding of epilepsy with emphasis on alleviating its social consequences; promoting exchange of knowledge between all disciplines providing care for people with epilepsy; supporting research into the evolution, investigation and management of seizure disorders; highlighting epilepsy as a public health priority among governments and health authorities; and assessing the needs of affected individuals to identify the most effective organisation of healthcare resources.
In the beginning
EUCARE was originally set up in 1998 as a partnership between the Commission on European Affairs (CEA) and UCB Pharma. Over time, members of the International Bureau for Epilepsy (IBE), representing patients and carers, joined the team and an expanded Scientific Advisory Board (SAB) oversees the multiple strands of the programme.
In 1998, over 100 leaders of European professional and lay bodies, representatives of the World Health Organisation (WHO), and health experts from governments and universities 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 picked up by EUCARE, who drew together a number of experts from 18 different European countries to produce the document.
White Paper launched
The European White Paper on Epilepsy was launched at the European Parliament in Brussels on 22nd March 2000. The host was Mr John Bowis MEP, who subsequently announced the formation of a political lobby group at the European Parliament entitled Parliamentary Advocates for Epilepsy on 22nd November 2001. More than 40 Members of the European Parliament (MEP) from all parties have pledged their willingness to be associated with this initiative. Furthermore, representatives from the World Health Organisation (WHO) also participated in the launch. The White Paper was formally endorsed by the WHO.
After the publication of the White Paper, the SAB was formally disbanded. Discussions have taken place to develop a new EUCARE programme. This will pursue projects around a central theme, namely, An observational study of pharmacological outcomes and lifestyle consequences of newly diagnosed epilepsy in different countries of Europe. More than 100 EUCARE centres will be recruited, who diagnose, investigate, manage and follow-up such patients. A structured protocol will be devised, but no direct intervention will take place regarding individual treatment decisions.
The aim of the programme will be to link patient outcomes with a range of educational, scientific and public policy projects that will be designed and led by members of a new SAB. Some of these will pursue aspects highlighted in the European White Paper on Epilepsy maintaining the link between EUCARE and Parliamentary Advocates for Epilepsy.
1. Brodie MJ, Shorvon SD, Canger R, Halasz P, Johannessen S, Thompson P, Wieser HG, Wolf P. Commission on European Affairs: appropriate standards of epilepsy care across Europe. Epilepsia 1997.
Martin Brodie, Scotland (Chair)
Michel Baulac, France
Mike Glynn, Ireland
Athanasios Covanis, Greece
Hanneke de Boer, Netherlands
John-Kenneth Saké, UCB Pharma
Scientific Advisory Board
Thanos Covanis, Greece
Gus Baker, UK
Ria Reis, Netherlands
Svein Johannessen, Norway
Peter Wolf, Germany
Alla Guekht, Russia
Emilio Perucca, Italy
Susanne Lund, Sweden