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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

Abstract 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 avo...

Ausführliche Beschreibung

Gespeichert in:
Hauptverfasser: Delphine Genevaz, Armelle Arnoux, Catherine Marcel, Anaïs Brassier, Samia Pichard, François Feillet, François Labarthe, Brigitte Chabrol, Marc Berger, Anne-Sophie Lapointe, Yvann Frigout, Bénédicte Héron, Gilles Chatellier, Nadia Belmatoug
Format: Artigo
Sprache:Inglês
Veröffentlicht: BMC 2022-02-01
Schriftenreihe:Orphanet Journal of Rare Diseases
Schlagworte:
Lysosomal diseases
Transition from childhood to adulthood
Patient survey
Patient opinion
Online-Zugang:https://doi.org/10.1186/s13023-022-02232-w
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