Growing up with a rare genetic disease: an interpretative phenomenological analysis of living with Holt-Oram syndrome-Reference-Cited by-同舟云学术

Growing up with a rare genetic disease: an interpretative phenomenological analysis of living with Holt-Oram syndrome

Published:2019-12-01 Issue: Volume: Page:1-8
ISSN:0963-8288
Container-title:Disability and Rehabilitation
language:en
Short-container-title:Disability and Rehabilitation

Author:

Brugallé Elodie¹,Antoine Pascal¹^ORCID,Geerts Laura²,Bellengier Laurence³,Manouvrier-Hanu Sylvie³⁴,Fantini-Hauwel Carole²

Affiliation:

1. UMR 9193 – SCALab – Sciences Cognitives et Sciences Affectives, CNRS, University of Lille, Villeneuve d’Ascq, France;

2. Center of Clinical Psychology, Psychopathology and Psychosomatic Research, Université Libre de Bruxelles, Bruxelles, Belgique;

3. EA 7364 - RADEME - Maladies RAres du Développement et du Métabolisme: du phénotype au génotype et à la Fonction, University of Lille, Lille, France;

4. Clinique de Génétique médicale Guy Fontaine et Centre de référence maladies rares pour les anomalies du développement Nord-Ouest, CHU de Lille, Lille, France

Publisher

Informa UK Limited

Subject

Rehabilitation

Link

https://www.tandfonline.com/doi/pdf/10.1080/09638288.2019.1697763

Reference48 articles.

1. Exploring quality of life in Italian patients with rare disease: a computer-aided content analysis of illness stories

2. Living with a rare disorder: a systematic review of the qualitative literature

3. Orphanet. Syndrome de Holt-Oram. 2013. Available from: http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=FR&Expert=392.

4. Different TBX5 interactions in heart and limb defined by Holt-Oram syndrome mutations

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