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Article

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

Orphanet journal of rare diseases - 19 Oct 2020

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

Abstract excerpt

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 diagnosed with WHS is unknown. This study aims to characterize the sociodemographic and psychosocial profile of WHS...

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Identifiers

PMID: 33076957
DOI: 10.1186/s13023-020-01476-8
PMCID: PMC7574588

Provenance

PubMed metadata and Literature Corpus relationships. Corpus snapshot updated 6 Sept 2026. Manifest publication-graph-cohort-2026-09-06.1.

Source receipt: pubmed, retrieved 6 Sept 2026.

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