Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey

Author:

Gumuchian Stephanie T.12,Delisle Vanessa C.12,Kwakkenbos Linda134,Pépin Mia1,Carrier Marie-Eve1,Malcarne Vanessa L.56,Peláez Sandra12,El-Baalbaki Ghassan7,Thombs Brett D.12489,

Affiliation:

1. Lady Davis Institute for Medical Research, Jewish General Hospital, Montréal, Canada;

2. Department of Educational and Counselling Psychology, McGill University, Montréal, Canada;

3. Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, the Netherlands;

4. Department of Psychiatry, McGill University, Montréal, Canada;

5. Department of Psychology, San Diego State University, San Diego, CA, USA;

6. San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA;

7. Department of Psychology, Université du Québec à Montréal, Montréal, Canada;

8. Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montréal, Canada;

9. Department of Medicine, McGill University, Montréal, Canada;

Funder

McGill University

Publisher

Informa UK Limited

Subject

Rehabilitation

Reference38 articles.

1. Orphanet. About rare diseases [Internet]. [cited 2017 Dec 5]; Available from: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN.

2. Life with a rare chronic disease: the scleroderma experience

3. European Organisation for Rare Diseases. Rare diseases: understanding this public health priority [Internet]. [cited 2017 December 5]; Available from: http://www.eurordis.org/IMG/pdf/princeps_document-EN.pdf.

4. Kole A, Faurisson F. The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and care in Europe [Internet]. [cited 2017 December 5]; Available from: http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf.

5. Why rare diseases are an important medical and social issue

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