The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis

The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis

Abstract Background The diagnostic odyssey for people with a rare disease is well known, but difficulties do not stop at diagnosis. Here we investigate the experience of people, or parents of children with a diagnosed mitochondrial respiratory chain disorder (MRCD) in the management of their disease...

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Bibliographic Details
Main Authors: Janet C. Long, Stephanie Best, Sarah Hatem, Tahlia Theodorou, Toni Catton, Sean Murray, Jeffrey Braithwaite, John Christodoulou
Format: Article
Language:English
Published: BMC 2021-07-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Qualitative research
Rare disease
Management
Consumer experience
Mitochondrial
Online Access:https://doi.org/10.1186/s13023-021-01939-6

Internet

https://doi.org/10.1186/s13023-021-01939-6

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