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Orphanet Journal of Rare Diseases
Published in: Orphanet Journal of Rare Diseases 1/2014

Open Access 01-12-2014 | Oral presentation

Identifying specific social challenges of rare diseases: current challenges and issues

Authors: Dorica Dan, Raquel Castro

Published in: Orphanet Journal of Rare Diseases | Special Issue 1/2014

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Excerpt

EURORDIS Care Survey program conducted with over 12000 patients in 23 countries (2002-2008) has concluded that «social security systems are usually designed around common diseases and are not flexible enough to take into consideration unprecedented health needs» [1] and has provided a few insights into rare diseases (RD) patients and families social challenges. Further data collection and literature review is needed in order to assess more accurately these social challenges. …
Literature
1.
EURORDIS: The Voice of 12,000 Patients. Paris: EURORDIS, 200922.
2.
European Commission: 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,. 2008, COM(2008) 679
3.
European Council: Council Recommendation of 8 June 2009 on an action in the field of Rare Diseases. (2009/C 151/02)
4.
European Commission: Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of The Regions: European Disability Strategy 2010-2020: A Renewed Commitment to a Barrier-Free Europe,. 2010, COM(2010) 636
5.
EUROPLAN: European Project for Rare Diseases National Plans Development: Final Report - Main results of the 15 EUROPLAN National Conferences. 2011, Document may be downloaded from the EUROPLAN website (http://​www.​europlanproject.​eu/​)
6.
EUCERD Joint Action: Rare Diseases: Addressing the Need for Specialised Social Services and Social Policies. 2012, Document may be downloaded from the EUCERD website (http://​www.​eucerd.​eu/​)
Metadata
Title
Identifying specific social challenges of rare diseases: current challenges and issues
Authors
Dorica Dan
Raquel Castro
Publication date
01-12-2014
Publisher
BioMed Central
Published in
Orphanet Journal of Rare Diseases / Issue Special Issue 1/2014
Electronic ISSN: 1750-1172
DOI
https://doi.org/10.1186/1750-1172-9-S1-O29

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