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欧盟罕见病专家委员会:为罕见病群体服务的富有成效的三年。

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

作者信息

Aymé Ségolène, Rodwell Charlotte

机构信息

INSERM, US14 - Orphanet, Paris, France.

出版信息

Orphanet J Rare Dis. 2014 Feb 28;9:30. doi: 10.1186/1750-1172-9-30.

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.

摘要

欧盟罕见病专家委员会受委托协助欧盟委员会开展多项任务,从监督各项举措,到建议未来可进行的改进和行动,此外还帮助加强欧洲和国际层面在罕见病领域的联络。欧盟罕见病专家委员会的三年任期于2013年7月结束,成果斐然。该委员会为未来工作奠定了基础,以便在已确定为广大罕见病群体所关注的关键领域继续取得进展:专业知识中心、欧洲参考网络、患者登记册和数据库、新生儿筛查以及国家罕见病计划/战略的指标。现在,委员会的工作应由新成立的欧盟委员会罕见病专家组继续开展。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/ef63/3942519/dd87c1a2a8b7/1750-1172-9-30-1.jpg

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