Summary report of 7th EUCERD meeting now available

December 18, 2012 in EUCERD Meeting, News

The European Union Committee of Experts on Rare Diseases (EUCERD www.eucerd.eu) met for the seventh time on 31 January 2013 – 1 February 2013.

The meeting saw the unanimous adoption of the EUCERD Recommendations on European Reference Networks for Rare Diseases, which will 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.

One of the main topics of discussion was the area of registries in the field of rare diseases. Members had a chance to discuss the first draft of the EUCERD Recommendations on Common Principles and Consensus on Patient Registries and Data Collection for Rare Diseases which will be further refined and discussed at a workshop foreseen in the scope of the EPIRARE /EUCERD Joint Action workshop on 22-23 April 2013 in Brussels. This workshop will also be aimed at working on a technical document of possible policy scenarios for rare disease patient registration concerning the direction the proposed European registry platform to be based at the EC’s Joint Research Centre in Ispra could take. Members were also provided with an update on the EUCERD Joint Action activities after one year.

In particular an update was given on the activities in the field of the coding and classification of rare diseases, the work being carried out on specialised social services, and work on the elaboration of an EUCERD Recommendation on Indicators for National Plans/Strategies for Rare Diseases.

Other topics discussed included newborn screening, the outcomes of an expert workshop held at the Joint Research Centre in Ispra with the collaboration of Eurogentest and the EUCERD on the genetic testing offer in Europe, and progress in the Member States to elaborate, adopt and implement rare disease plans/strategies before the end of 2013.

The public executive summary of the 7th meeting of the European Union Committee of Experts on Rare Diseases, held on 31 January 2013 – 1 February 2013 is now available online (Read the summary)