It’s official - the EU Committee of Experts on Rare Diseases is established - the call for expressions of interest now open
The European Commission decision of 30 November 2009, published in the Official Journal of the European Union, formally establishes a European Union Committee of Experts on Rare Diseases. This new structure, evoked in Point 7 of the Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe’s Challenges, adopted on 11 November 2008, recommends that the European Commission be assisted by a European Union Advisory Committee on Rare Diseases:
"The preparation and implementation of Community activities in the field of rare diseases require close cooperation with the specialised bodies in Member States and with the interested parties. Therefore, a framework is required for the purpose of regular consultations with those bodies, with the managers of projects supported by the European Commission in the fields of research and public health action and with other relevant stakeholders acting in the field."
Thus, “the Committee acting in the public interest shall assist the Commission in formulating and implementing the Community’s activities in the field of rare diseases, and shall foster exchanges of relevant experience, policies and practices between the Member States and the various parties involved”.
Specifically, the European Union Committee of Experts on Rare Diseases is charged with the following responsibilities:
The new Committee will consist of 51 members, including one representative coming from the ministries or government agencies responsible for rare diseases to be designated by the government of each Member State; four patient organisation representatives; four pharmaceutical industry representatives; nine representatives of ongoing and/or past Community projects in the field of rare diseases financed by the programmes of Community action in the field of health, including three members of the pilot European Reference Networks on rare diseases; six representatives of ongoing and/or past rare diseases projects financed by the Community Framework Programmes for Research and Technological Development; and one representative of the European Centre for Disease Prevention and Control. The Committee will elect a chairperson and three vice-chairpersons, with a one-year term of office, from different categories of members of the Committee. The new Committee may establish temporary Working Groups consisting of external experts for specific missions.
A call for expressions of interest has been published for the patient organisation, industry, rare diseases research projects under Framework Programmes for Research and Technological Development , and rare diseases projects under Health Programmes representatives of the new Committee. The deadline for submitting an expression of interest for any of these representative roles is 21 December 2009. The calls for expression of interest can also be consulted in the Official Journal of the European Union and on the Commission website (in the What’s New column located on the right side of the page).
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). For a summary of the activities and accomplishments of the RDTF over the past six years, consult the spotlight article appearing in this newsletter.