Somewhere to go: a position paper on addressing gaps in transition care for adults with childhood-onset rare diseases

Abstract Adults with childhood-onset rare disease face many challenges when transitioning from pediatric services to adult care. While they often received specialized pediatric care, the adult healthcare system provides few resources for those whose rare disease began in childhood. Many adult care p...

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Bibliographic Details

Published in:	Orphanet Journal of Rare Diseases
Main Authors:	Laura L. Tosi, Tracy S. Hart, Gabriela Beug, Erika Carter, Eleanor M. Perfetto
Format:	Article
Language:	English
Published:	BMC 2025-10-01
Subjects:	Transition of care Adult rare disease care Childhood-onset rare disease
Online Access:	https://doi.org/10.1186/s13023-025-03973-0