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

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. The wo...

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Detalles Bibliográficos
Autores principales: Long, Janet C., Best, Stephanie, Hatem, Sarah, Theodorou, Tahlia, Catton, Toni, Murray, Sean, Braithwaite, Jeffrey, Christodoulou, John
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8276535/
https://www.ncbi.nlm.nih.gov/pubmed/34256797
http://dx.doi.org/10.1186/s13023-021-01939-6

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