The creation of this Committee is one of the well expected concrete implementing measures of the adoption of the Commission Communication on Rare Diseases in November 2008. The publication of the decision was already expected since July 2009, however other priorities like the EU strategy to address the challenges of the H1N1 flu epidemic has postponed it to the Fall. The Decision has been adopted internally and is now being translated in the 22 languages. When the translation will be completed, the official publication will be possible.
The EU Committee of Experts on Rare Diseases (CERD) will be composed of 51 members. The Committee will be composed of 1 representative from each 27 Member States appointed by their governments and 25 representatives appointed by the Commission: 4 patient representatives, 4 industry representatives, 9 experts representatives of projects funded by DG SanCo including representatives of the European Reference Networks, 6 experts representatives of projects funded by DG Research, 1 representative from the European Centre for Disease Control. All 51 members will have alternates. As soon as the Decision will be published, a Call for Expression of Interest will be issued by the Commission to appoint the the representatives to be appointed by the Commission.
The first meeting of the EU Committee of Experts on Rare Diseases (CERD) is foreseen for End February 2010 / Early March 2010, around Rare Disease Day, in Brussels.
Related link: European Commission Communication on Rare Disease