Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
Author:
Affiliation:
1. School of Nursing; University of British Columbia; Wesbrook Mall, Vancouver BC V6T 2B5 Canada
Funder
Rare Disease Foundation
Publisher
Wiley
Subject
Genetics (clinical)
Link
http://link.springer.com/article/10.1007/s10897-018-0294-9/fulltext.html
Reference34 articles.
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3. Shared decision making - the pinnacle of patient-centered care;Barry;New England Journal of Medicine,2012
4. FORGE Canada Consortium: outcomes of a 2-year national rare-disease gene-discovery project;Beaulieu;American Journal of Human Genetics,2014
5. Benefits of support conferences for parents of and people with Moebius syndrome;Bogart;Stigma and Health,2016
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