Executive Summary of the 8th Meeting of the EUCERD now online

A number of key topics were presented and discussed

July 8 2013

The 8th Meeting of the European Union Committee of Experts on Rare Diseases (EUCERD) was held  on the 5-6 June 2013 in Luxembourg and marked the last meeting of the current mandate. The EUCERD’s Bureau and Members bowed out having received the thanks of the European Commission from the Director for Public Health, Mr. John F. Ryan, with the adoption of five recommendations as proof of the previous two and half years of hard work and consensus building.

During the meeting a number of key topics were presented and discussed, including steps towards the establishment of a European platform for rare diseases registries, the role and content of a possible European Research Infrastructure Consortium on rare diseases information for research, the EUCERD opinion on newborn screening, and next steps towards the development of a EUCERD recommendation on genetic testing for rare diseases.

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