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Editorial
. 2014 Feb 28:9:30.
doi: 10.1186/1750-1172-9-30.

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

Ségolène Aymé  1 , Charlotte Rodwell
Affiliations
Editorial

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

Ségolène Aymé et al. Orphanet J Rare Dis. .

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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Figures

Figure 1
Figure 1
Composition of the EUCERD.
Figure 2
Figure 2
Evolution of concepts and initiatives in the field of rare diseases in Europe.
Figure 3
Figure 3
The EUCERD’s work process.
See this image and copyright information in PMC

References

    1. European Union Committee of Experts on Rare Diseases website. [ http://www.eucerd.eu] - PMC - PubMed
    1. Commission Decision establishing a European Union Committee of Experts on Rare Diseases (2009/872/EC), 30 November 2009. [ http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2009:315:0018...]
    1. Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare diseases: Europe's challenges COM (2008) 679 final. 2008. [ http://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf]
    1. Council Recommendation on an action in the field of rare diseases (2009/C 151/02) 2009. [ http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:C:2009:151:0007...]
    1. OrphaNews Europe. [ http://www.orphanews.org]

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