Like another famous European creation, the new Committee of Experts on Rare Diseases will not be built in a day...
As was reported in the 9 December 2009 issue of OrphaNews Europe, the European Union Committee of Experts on Rare Diseases (EUCERD) was established following the publication of the European Commission decision of 30 November 2009 in the Official Journal of the European Union. A call for expressions of interest consequently was issued, with a closing date of 21 December 2009. 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.
Following this initial flurry of activity, events have since slowed to a halt. A bottleneck occurred around the establishment of the new European Commission - a process that was held up by various incidents, including a delay in the signing of the EU Lisbon reform treaty. Consequently, the EUCERD appointments have not yet been established and the first EUCERD meeting has now been postponed until May of this year. OrphaNews Europe is keeping its finger on the pulse and will inform readers of any stirring of activity around the new Committee. The European Union Committee of Experts on Rare Diseases replaces the European Commission’s Rare Diseases Task Force. 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, recommends that the European Commission be assisted by a European Union Advisory Committee on Rare Diseases. Learn more about the new Committee of Experts on Rare Diseases