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The European Union Committee of Experts on Rare Diseases
Rare diseases are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. As a guide, the European Commission uses the prevalence of no more than 5 per 10,000 persons in Europe to describe a disease with a low prevalence.
The European Union Committee of Experts on Rare Diseases was formally established via the European Commission Decision of 30 November 2009 (2009/872/EC) . This committee is charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant European authorities in the fields of research and public health action and other relevant stakeholders acting in the field. The EUCERD will foster exchanges of relevant experience, policies and practices between these parties.
Specifically, the EUCERD is charged with the following responsibilities:
- assisting the Commission in the monitoring, evaluating and disseminating the results of measures taken at Community and national level in the field of rare diseases;
- contributing to the implementation of Community actions in the field, in particular by analysing the results and suggesting improvements to the measures taken;
- contributing to the preparation of Commission reports on the implementation of the Commission Communication and the Council Recommendation;
- delivering opinions, recommendations or reports to the Commission either at the latter’s request or on its own initiative;
- assisting the Commission in international cooperation on matters relating to rare diseases;
- assisting the Commission in drawing up guidelines, recommendations and any other action defined in the Commission Communication and in the Council Recommendation;
- providing an annual report of its activities to the Commission.
The new Committee may establish temporary Working Groups consisting of external experts for specific missions.
The European Union Committee of Experts on Rare Diseases replaces the European Commission’s Rare Diseases Task Force (RDTF) established via Commission Decision 2004/192/EC of 25 February 2004 on the programme of Community action in the field of public health (2003 to 2008).
Rare Diseases on the DG Sanco website
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