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

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

Abstract 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 f...

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Bibliographic Details
Main Authors: Julie McMullan, Ashleen L. Crowe, Caitlin Bailie, Kerry Moore, Lauren S. McMullan, Nahid Shamandi, Helen McAneney, Amy Jayne McKnight
Format: Article
Language:English
Published: BMC 2020-11-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Collaborative groups
Communication
Northern Ireland
Online
Rare disease
Semi-structured interview
Online Access:http://link.springer.com/article/10.1186/s13023-020-01559-6

Internet

http://link.springer.com/article/10.1186/s13023-020-01559-6

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