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

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 Europea...

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Autores principales: Aymé, Ségolène, Rodwell, Charlotte
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942519/
https://www.ncbi.nlm.nih.gov/pubmed/24580800
http://dx.doi.org/10.1186/1750-1172-9-30
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author Aymé, Ségolène
Rodwell, Charlotte
author_facet Aymé, Ségolène
Rodwell, Charlotte
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description 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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spelling pubmed-39425192014-03-06 The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community Aymé, Ségolène Rodwell, Charlotte Orphanet J Rare Dis Editorial 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. BioMed Central 2014-02-28 /pmc/articles/PMC3942519/ /pubmed/24580800 http://dx.doi.org/10.1186/1750-1172-9-30 Text en Copyright © 2014 Aymé and Rodwell; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Editorial
Aymé, Ségolène
Rodwell, Charlotte
The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title_full The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title_fullStr The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title_full_unstemmed The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title_short The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
title_sort european union committee of experts on rare diseases: three productive years at the service of the rare disease community
topic Editorial
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942519/
https://www.ncbi.nlm.nih.gov/pubmed/24580800
http://dx.doi.org/10.1186/1750-1172-9-30
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