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Living with a rare disease - experiences and needs in pediatric patients and their parents

BACKGROUND: A rare disease (RD) diagnosis and therapy can affect the family’s quality of life and mental health. A lack of information and missing care options lead to helplessness and psychological stress within families. This work aims to identify patients’ and parents’ experiences in daily life a...

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Detalles Bibliográficos
Autores principales:	Witt, Stefanie, Schuett, Katharina, Wiegand-Grefe, Silke, Boettcher, Johannes, Quitmann, Julia
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2023
Materias:	Research
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10422846/ https://www.ncbi.nlm.nih.gov/pubmed/37568186 http://dx.doi.org/10.1186/s13023-023-02837-9

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