European Union committee of experts on rare diseases - Page updated
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.
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.
Following the Call of Expression of Interest for the appointment of members of the Committee (closed 21st December 2009):
- Patient's representatives
- Pharmaceutical industry representatives
- Rare Diseases Research Projects under Framework Programmes for Research and Technological Development representatives
- Rare Diseases Projects under Health Programmes representatives
A committee of rare disease experts helps the European Commission formulate and implement policy to combat rare diseases.
The need for such a committee was identified in the Communication on rare diseases: Europe's challenges COM(2008) 679 final, and Commission Decision – 2009/872/EC formally set it up.
- See committee of rare disease experts
- See European and international conferences on rare diseases
- See also Orphanews, the twice monthly newsletter of the EUCERD (European Union Committee of Experts on Rare Diseases)
- See the EUCERD recommendations and opinions
- Publication date
- 4 August 2010
- Directorate-General for Health and Food Safety