Patient and family experiences of lysosomal storage diseases in Canada: A qualitative interview study

Patient and family experiences of lysosomal storage diseases in Canada: A qualitative interview study

Abstract Canadian patients and families affected by rare genetic lysosomal storage diseases (LSDs) suffer from numerous challenges related to disease management, including issues navigating healthcare and social support services, access to orphan drugs, and intensive treatment regimens. These challe...

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Bibliographic Details
Main Authors: Nahya Awada, Martin Holcik
Format: Article
Language:English
Published: Wiley 2024-03-01
Series:JIMD Reports
Subjects:
access
health care
lived experience
lysosomal storage diseases
orphan drugs
patient advocacy
Online Access:https://doi.org/10.1002/jmd2.12403

Internet

https://doi.org/10.1002/jmd2.12403

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