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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Bibliografiske detaljer
Udgivet i: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
Format: Artigo
Sprog:Inglês
Udgivet: BioMed Central 2020
Fag:
Research
Online adgang: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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