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Parents’ experiences of living with, and caring for children, adolescents and young adults with Mucopolysaccharidosis (MPS)
BACKGROUND: Many rare diseases of childhood are life-threatening and chronically debilitating, so living with a rare disease is an on-going challenge for patients and their families. MPS is one of a range of rare inherited metabolic disorders (IMDs) that come under category 3 of life-limiting condit...
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| Publicado no: | Orphanet J Rare Dis |
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| Main Authors: | , |
| Formato: | Artigo |
| Idioma: | Inglês |
| Publicado em: |
BioMed Central
2016
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| Assuntos: | |
| Acesso em linha: | https://ncbi.nlm.nih.gov/pmc/articles/PMC5057247/ https://ncbi.nlm.nih.gov/pubmed/27724940 https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-016-0521-0 |
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