The Committee had 51 members, nominated following specific calls for expression of interest. This included:

  • 1 representative of each of the 27 European Union Member states;
  • 4 representatives of patient organisations;
  • 4 representatives from the pharmaceutical industry;
  • 9 representatives of ongoing and/or past Community projects in the field of RD financed by programmes of Community action in the field of health (including 3 representatives of existing pilot networks of European Reference Networks);
  • 6 representatives of ongoing and/or past RD projects financed by the Community Framework Programmes for Research and Technological Development;
  • Representatives of DG Sanco, DG Research, DG Enterprise and Eurostat;
  • 1 representative of the European Centre for Disease Prevention and Control (ECDC).

Representatives from the European Medicines Agency, as well as the Chair or Vice-Chair of the COMP attended the meetings. EFTA states party to the Agreement of the European Economic Area also had representation.

Representatives of international or professional organisations acting in the field of rare diseases also attended as Observers at some of the meetings

Consult the former EUCERD’s  list of national representatives.

Consult the former EUCERD’s list of interest groups’ representatives designated by the Commission Decision 201/C204/02.