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The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community.

Abstract : The European Union Committee of Experts on Rare Diseases was entrusted with aiding the European Commission in a number of tasks, ranging from the monitoring of initiatives, to recommending improvements and actions to be pursued in the future, in addition to helping strengthen liaison at both European and International levels in the field of rare diseases. The three-year mandate of the EUCERD drew to a close in July 2013 with an impressive record. The EUCERD has laid down the foundations for future work so as to continue to advance in the key areas that have been identified as of interest for the rare disease community at large: centres of expertise, European Reference Networks, patient registries and databases, newborn screening, and indicators for national rare disease plans/strategies. The work of the Committee should now be continued by the newly formed European Commission Expert Group on Rare Diseases.
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Submitted on : Wednesday, March 5, 2014 - 5:07:32 AM
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Ségolène Aymé, Charlotte Rodwell. The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community.. Orphanet Journal of Rare Diseases, BioMed Central, 2014, 9 (1), pp.30. ⟨10.1186/1750-1172-9-30⟩. ⟨inserm-00955666⟩

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