Transition from child to adult health care for patients with lysosomal storage diseases in France: current status and priorities—the TENALYS study, a patient perspective survey

BACKGROUND: Transition from childhood to adulthood (TCA) is usually difficult in rare, progressive and multisystemic diseases. New treatments and modalities of care for many lysosomal diseases (LD) can increase life expectancy, and a successful TCA can help patient who reach adulthood to avoid disru...

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Detalles Bibliográficos
Autores principales: Genevaz, Delphine, Arnoux, Armelle, Marcel, Catherine, Brassier, Anaïs, Pichard, Samia, Feillet, François, Labarthe, François, Chabrol, Brigitte, Berger, Marc, Lapointe, Anne-Sophie, Frigout, Yvann, Héron, Bénédicte, Chatellier, Gilles, Belmatoug, Nadia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8862388/
https://www.ncbi.nlm.nih.gov/pubmed/35189927
http://dx.doi.org/10.1186/s13023-022-02232-w

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