Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers

BACKGROUND: Wolf-Hirschhorn Syndrome (WHS) is a rare, congenital disease characterized by a distinctive facial phenotype, seizures, intellectual disability and developmental delay, and pre and postnatal growth requiring lifelong care. The psychosocial status of the family caregivers of children diag...

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Dades bibliogràfiques
Publicat a:Orphanet J Rare Dis
Autors principals: Berrocoso, Sarah, Amayra, Imanol, Lázaro, Esther, Martínez, Oscar, López-Paz, Juan Francisco, García, Maitane, Pérez, Manuel, Al-Rashaida, Mohammad, Rodríguez, Alicia Aurora, Luna, Paula Maria, Pérez-Núñez, Paula, Blanco, Raquel, Nevado, Julián
Format: Artigo
Idioma:Inglês
Publicat: BioMed Central 2020
Matèries:
Research
Accés en línia:https://ncbi.nlm.nih.gov/pmc/articles/PMC7574588/
https://ncbi.nlm.nih.gov/pubmed/33076957
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-020-01476-8
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