The European Commission (EC ) has recently announced the members of its new Committee of Experts on Rare Diseases (EU CERD ). Established in November 2009, the EU CERD is charged with aiding the EU with the preparation and implementation of activities in the field of rare diseases, in cooperation and consultation with the specialized bodies in Member States, the relevant European authorities in the fields of research and public health action and other relevant stakeholders.
The EU CERD’s fifty-one members include four representatives from patient organizations, four representatives of the pharmaceutical industry and nine representatives of community projects financed by the EU. The new appointees bring to the table a diversity of opinions and backgrounds that will enrich the discussions. They include the European patient organization EURORDIS , the rare disease information portal Orphanet , various academic and research institutions throughout Europe, as well as pharmaceutical companies that demonstrate a commitment to developing rare disease products, including Genzyme, Celgene, Orphan Europe and Baxter. This is the first time representatives of the pharma industry have been involved in such a Committee, which reflects the importance to involving them in discussions and recommendations in the field of rare diseases.
It is an objective of the EU CERD to foster exchanges of relevant experience, policies and practices between these parties, leading to a closer collaboration between member states, European institutions and other stakeholders (pharmaceutical industry, patients’ associations). In the future, the members of the EU CERD will be responsible for heading the implementation of EU activities in rare diseases.