Caring for children with spinal muscular atrophy in Greece: parents' and caregivers' experience with the healthcare system

IntroductionSpinal muscular atrophy (SMA) is a rare disease characterized by challenges in its management both for patients and parents/caregivers. In Greece, these challenges are exacerbated by the lack of an integrated SMA patient pathway. This survey mapped the experiences of parents of SMA pedia...

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Autori principali:	Kyriakos Souliotis, Christina Golna, Chara Tzavara, Christiana Vasileiadi, Pavlos Golnas, Aikaterini Ntokou, Kornilia Binou, Antigone Karras
Natura:	Artigo
Lingua:	Inglês
Pubblicazione:	Frontiers Media S.A. 2025-10-01
Serie:	Frontiers in Health Services
Soggetti:	patient journey spinal muscular atrophy disease burden quality of life health policy patient advocacy
Accesso online:	https://www.frontiersin.org/articles/10.3389/frhs.2025.1612270/full
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