Executive Summary of the 7th Meeting of the EUCERD now online

April 10, 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. 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.

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.

Other topics discussed included coding and classification of rare diseases, newborn screening, the outcomes of an expert workshop held at the Joint Research Centre in Ispra 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.

Information via: Orphanet

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