On 24 October 2011, during the third meeting of the European Union Committee of Experts on Rare Diseases (EUCERD), the Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States were unanimously adopted by the 51-member EUCERD, which has representatives from all 27 EU Member States and from all domains relevant to the fields of rare diseases and orphan drugs, including academia, government, the biopharmaceutical industry and patient organisations.
This is the first set of recommendations adopted by this committee. Developing Centres of Expertise and European Reference Networks in the field of rare diseases has been proposed in the Council Recommendation on an Action in the Field of Rare Diseases and more recently in the Cross-Border Healthcare Directive as a means of organising care for the thousands of heterogeneous rare conditions affecting scattered patient populations across Europe. In order to share knowledge and expertise more efficiently, the EUCERD recommendations seek to introduce harmonious standards of quality practices by elaborating criteria for the Member States to incorporate into their process to designate Centres of Expertise.
EUCERD, formally the Rare Diseases Task Force, has already issued a series of reports investigating the state-of-the-art in the field. The 45 Recommendations build upon this work already achieved and assist the Member States to develop their healthcare pathways at both the national and EU levels in the field of rare diseases. The recommendations cover the Mission and Scope of the Centres of Expertise; the Criteria for Designating Centres of Expertise; the Process of Designating and Evaluating National Centres of Expertise; and the European Dimension of Centres of Expertise.
The EUCERD Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases in Member States are available on the EUCERD Website.