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
Autores principales: McMullan, Julie, Crowe, Ashleen L., Bailie, Caitlin, Moore, Kerry, McMullan, Lauren S., Shamandi, Nahid, McAneney, Helen, McKnight, Amy Jayne
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7649905/
https://www.ncbi.nlm.nih.gov/pubmed/33168042
http://dx.doi.org/10.1186/s13023-020-01559-6

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