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Health-Related Quality of Life and mental health of families with children and adolescents affected by rare diseases and high disease burden: the perspective of affected children and their siblings

BACKGROUND: Advances in genetic and pharmaceutical technology and pediatric care have enabled treatment options for an increasing number of rare diseases in affected children. However, as current treatment options are primarily of palliative nature, the Health-Related Quality of Life (HRQoL) and men...

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Detalles Bibliográficos
Autores principales:	Wiegand-Grefe, Silke, Liedtke, Anna, Morgenstern, Lydia, Hoff, Antonia, Csengoe-Norris, Anikó, Johannsen, Jessika, Denecke, Jonas, Barkmann, Claus, Grolle, Benjamin, Daubmann, Anne, Wegscheider, Karl, Boettcher, Johannes
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2022
Materias:	Research Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9563162/ https://www.ncbi.nlm.nih.gov/pubmed/36229869 http://dx.doi.org/10.1186/s12887-022-03663-x

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