Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review-Reference-Cited by-同舟云学术

Perceived Benefits and Factors that Influence the Ability to Establish and Maintain Patient Support Groups in Rare Diseases: A Scoping Review

Published:2016-12-21 Issue:3 Volume:10 Page:283-293
ISSN:1178-1653
Container-title:The Patient - Patient-Centered Outcomes Research
language:en
Short-container-title:Patient

Author:

Delisle Vanessa C.,Gumuchian Stephanie T.,Rice Danielle B.,Levis Alexander W.,Kloda Lorie A.,Körner Annett,Thombs Brett D.^ORCID

Publisher

Springer Science and Business Media LLC

Link

http://link.springer.com/article/10.1007/s40271-016-0213-9/fulltext.html

Reference47 articles.

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2. Canadian Organization for Rare Disorders. Key facts. 2015. https://www.raredisorders.ca/about-cord/ . Accessed 15 Oct 2015.

3. Kole A, Faurisson F. The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and care in Europe. 2009. http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf . Accessed 15 Oct 2015.

4. European Organisation for Rare Diseases. Rare diseases: understanding this public health priority. 2005. http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf . Accessed 15 Oct 2015.

5. Kralik D. The quest for ordinariness: transition experienced by midlife women living with chronic illness. J Adv Nurs. 2002;39:146–54.

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