The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community
| Autor: | Ségolène Aymé, Charlotte Rodwell |
|---|---|
| Přispěvatelé: | Plateforme d'information et de services pour les maladies rares et les médicaments orphelins (Orphanet), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Hôpital Broussais-Institut National de la Santé et de la Recherche Médicale (INSERM), The work of the Scientific Secretariat of the European Union Committee of Experts on Rare Diseases was financed by two consecutive Joint Actions between Member States from the European Commission's Executive Agency for Health and Consumers: the Scientific Secretariat of the European Union Committee of Rare Diseases Joint Action N° 2008 22 91 and European Union Committee of Rare Diseases Joint Action: Working for Rare Diseases N° 2011 22 01., BMC, Ed. |
| Jazyk: | angličtina |
| Rok vydání: | 2014 |
| Předmět: |
media_common.quotation_subject
Patient registries Centres of expertise [SDV.GEN] Life Sciences [q-bio]/Genetics Public administration Recommendations Rare Diseases Political science National plans/strategies for rare diseases European reference networks Humans media_common.cataloged_instance European commission Genetics(clinical) Pharmacology (medical) Access to orphan medicinal products European Union European union Genetics (clinical) media_common Medicine(all) [SDV.GEN]Life Sciences [q-bio]/Genetics business.industry Environmental resource management European policy General Medicine Expert group 3. Good health Editorial Work (electrical) Service (economics) Mandate business Rare disease |
| Zdroj: | Orphanet Journal of Rare Diseases Orphanet Journal of Rare Diseases, BioMed Central, 2014, 9 (1), pp.30. ⟨10.1186/1750-1172-9-30⟩ |
| ISSN: | 1750-1172 |
| DOI: | 10.1186/1750-1172-9-30⟩ |
| Popis: | International audience; 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. |
| Databáze: | OpenAIRE |
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