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Home2009 Report on the state of the art of rare disease activities in Europe of the European Union Committee of Experts on Rare Diseases
2009 Report on the state of the art of rare disease activities in Europe of the European Union Committee of Experts on Rare Diseases
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This work is based on the systematic surveillance of international literature and on a systematic query of key stakeholders in the 27 Member States (MS) of the European Union. These are the members of the RDTF, MS country coordinators of Orphanet, and the 110 members of the Orphanet scientific advisory board. Queries are sent electronically by the RDTF scientific office. The data is published as news in OrphaNews Europe, the newsletter of the RDTF, which currently has over 11,7001 registered readers. It was also planned to analyse this data and to produce yearly reports providing an overview of progress made towards finding a better approach to meeting the needs of the RD patient community, in order to use this information to propose recommendations for future action at the MS and EU levels.
- Published:
- Corporate author(s): Directorate-General for Health and Consumers (European Commission) , European Union Committee of Experts on Rare Diseases (EUCERD)
- Personal author(s): Aymé, S ; Rodwell, C
- Themes: Public health
- Subject: EU programme , health care , health policy , illness , medical research , public health , report
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| ISSN 1977-2645 | ISBN 978-92-79-16212-1 | DOI 10.2772/11801 | Catalogue number ND-31-10-523-EN-C |
- Released on EU Publications:
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