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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Dades bibliogràfiques
Publicat a:Orphanet J Rare Dis
Autors principals: McMullan, Julie, Crowe, Ashleen L., Bailie, Caitlin, Moore, Kerry, McMullan, Lauren S., Shamandi, Nahid, McAneney, Helen, McKnight, Amy Jayne
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2020
Matèries:
Research
Accés en línia: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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