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Qualitative needs assessment of financial impact on caregivers of children living with rare diseases

Purpose: Families caring for children with rare diseases face sustained financial, emotional, and systemic challenges, yet cross-disease, cross-regional data remain limited. This study investigates the financial impact of caregiving from the perspective of rare disease advocacy organisations, rather...

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Autors principals: Florian Delval, James Levine
Format: Artigo
Idioma:Inglês
Publicat: Elsevier 2026-01-01
Col·lecció:Rare
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Accés en línia:http://www.sciencedirect.com/science/article/pii/S2950008726000037
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