Survey of healthcare experiences of Australian adults living with rare diseases

BACKGROUND: Few studies have examined whether the healthcare needs of people living with rare diseases are being met. This study explores the experiences of Australian adults living with rare diseases in relation to diagnosis, information provision at the time of diagnosis, use of health and support...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Molster, Caron, Urwin, Debra, Di Pietro, Louisa, Fookes, Megan, Petrie, Dianne, van der Laan, Sharon, Dawkins, Hugh
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2016
Assuntos:
Research
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC4806449/
https://ncbi.nlm.nih.gov/pubmed/27012247
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-016-0409-z
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