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Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 par...

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Publicado en:Int J Environ Res Public Health
Autores principales: Güeita-Rodriguez, Javier, Famoso-Pérez, Pilar, Salom-Moreno, Jaime, Carrasco-Garrido, Pilar, Pérez-Corrales, Jorge, Palacios-Ceña, Domingo
Formato: Artigo
Lenguaje:Inglês
Publicado: MDPI 2020
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Acceso en línea:https://ncbi.nlm.nih.gov/pmc/articles/PMC7345745/
https://ncbi.nlm.nih.gov/pubmed/32575920
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.3390/ijerph17124466
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