Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate

BACKGROUND: Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families...

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Detalles Bibliográficos
Publicado en:Orphanet J Rare Dis
Main Authors: McMullan, Julie, Crowe, Ashleen L., Bailie, Caitlin, Moore, Kerry, McMullan, Lauren S., Shamandi, Nahid, McAneney, Helen, McKnight, Amy Jayne
Formato: Artigo
Idioma:Inglês
Publicado: BioMed Central 2020
Assuntos:
Research
Acceso en liña:https://ncbi.nlm.nih.gov/pmc/articles/PMC7649905/
https://ncbi.nlm.nih.gov/pubmed/33168042
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01559-6
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