About DEBRA International Brief History

About DebRA

Description
Objectives
Brief History
Activities
Member Groups

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DebRA Europe was founded, on the initiative of the French and UK national EB support groups, in 1992 at an inaugural meeting held in Strasbourg, with the assistance of funding from a Concerted Action of the European Union BioMed programme.

The original membership has now grown to cover most of Western Europe with a growing representation in Central and Eastern Europe. Close liaison is maintained with non-European EB support groups.

Annual meetings have been held in Manchester (UK), Dublin (Ireland), Marbella (Spain), Opporto (Potugal), Catania (Italy), Salzburg (Austria), Noordwijkerhout (Netherlands), Marseille (France), Dubrovnik (Croatia), London (UK) and Neuchâtel (Switzerland), Stuttgart (Germany) and Stockholm (Sweden). The next meeting will be in Salzburg (Austria) on 20-22 October 2006.

DEBRA Europe is active in European disability programmes and represents EB within the European Disability Forum. DebRA Europe is also active in the European Alliance of patient and parent organisations for Genetic Services and innovation in medicine (EAGS) and the European Platform of Patients’ Organisations, Science and Industry (EPPOSI). Several member groups of DebRA Europe are members of Eurordis.

In 1995 DebRA International was founded to create a platform for communication and co-ordination between EB support groups worldwide. An International Medical and Scientific Advisory Panel was established in 1999 to co-ordinate the research efforts of member groups. All research grant applications received by any member of DebRA International are peer reviewed by this panel to avoid duplication of effort and to ensure that available funding is focused on the priority areas for investigation.