European Union committee of experts on rare diseases

In November 2009, the Commission established by Decision 2009/872/EC a European Union Committee of experts on rare diseases. The Committee was composed of one representative per Member State from ministries or government agencies responsible for rare diseases, representatives from patient's organisations, the pharmaceutical industry and rare diseases experts. The preparation and implementation of EU activities on rare diseases require close cooperation with the specialized bodies in Member States and with the interested parties. The Committee was responsible to:

(a) assist the Commission in the monitoring, evaluating and disseminating the results of measures taken at Community and national level in the field of rare diseases;

(b) contribute to the implementation of Community actions in the field, in particular by analysing the results and suggesting improvements to the measures taken;

(c) contribute to the preparation of Commission reports on the implementation of the Commission Communication and the Council Recommendation;

(d) deliver opinions, recommendations or submit reports to the Commission either at the latter’s request or on its own initiative;

(e) assist the Commission in international cooperation on matters relating to rare diseases;

(f) assist the Commission in drawing up guidelines, recommendations and any other action defined in the Commission Communication and in the Council Recommendation;

(g) provide an annual report of its activities to the Commission.

This Committee replaces the European Union Rare Diseases Task Force.

See web site of the European Union Committee of Experts on Rare Diseases

Appointment of members of theEuropean Union Committee of experts on rare diseases

Member States representatives, Candidate Countries representatives and EEA representatives were appointed by the respective national authorities.

See list of national representativespdf(66 KB)

See list of interest groups representatives designated by the Commission Decision 2010/C 204/02pdf

Following the Call of Expression of Interest for the appointment of members of the Committee (closed 21st December 2009):