NEWS - EU NEWS

The Council Recommendation on an Action in the field of Rare Diseases, adopted on 9 June of this year, stipulates the establishment of a European Committee of Experts on Rare Diseases. The Commission Decision establishing a European Union Committee of Experts on Rare Diseases is expected to be published shortly and the first meeting would take place on 26 February 2010  to mark the 3rd World Rare Disease Day.

 

As a legal entity, the new Committee will be able to make recommendations to the EU Member States, as well as the EU Parliament, the European Medicines Agency, the Committee for Orphan Medicinal Products and the United Nations.
 
The European Committee of Experts on Rare Diseases will include one representative from each member state, four representatives from patient organisations, four representatives of the pharmaceutical industry, six representatives from former rare disease projects, and one representative from the European Centre for Disease Control, each of whom will have a three year mandate.

 

Concerning the possible collaboration between the Committee and the High Level Group on European Networks of

Reference, it was suggested that the possibility of the Committee playing the role of preimplementing

European Reference Networks for rare diseases be explored when the Cross-border Directive is approved