EUCERD - European Reference Networks for Rare Diseases

EUCERD unanimously adopts recommendation on European Reference Networks for Rare Diseases

At their 7th Meeting on 31 January 2013 in Luxembourg, the European Union Committee of Experts on Rare Diseases (EUCERD) unanimously adopted their third recommendation to date, entitled 'EUCERD Recommendations on European Reference Networks for Rare Diseases'.
The recommendations were elaborated by the Committee to feed into the work of the Cross-Border Healthcare Expert Group, currently in the process of aiding the European Commission implement the Cross-Border Healthcare Directive, adopted on 28 February 2011 (For further details). European Reference Networks (ERNs) are one of the structures foreseen by the Directive to share knowledge, facilitate the mobility of expertise, and to allow Member States to provide highly specialised services of high quality for patients where this would have been impossible without European networking, such as in the case of rare diseases. Member States are also encouraged in the Council Recommendation on an action in the field of rare diseases (8 June 2009) to help foster the participation of centres of expertise in these ERNs. The EUCERD has already elaborated recommendations concerning centres of expertise for rare diseases which describes how these centres could participate in such networks.
The recommendation is addressed to the European Commission and the Member States and includes 21 individual recommendations covering a range of aspects including the mission, vision and scope of ERNs, their governance, their composition, their funding and evaluation, as well as their designation.
The "EUCERD Recommendations on European Reference Networks for Rare Diseases" are now available here