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.
Delphine GenevazArmelle ArnouxCatherine MarcelAnaïs BrassierSamia PichardFrançois FeilletFrançois LabartheBrigitte ChabrolMarc BergerAnne-Sophie LapointeYvann FrigoutBénédicte HéronGilles ChatellierNadia BelmatougPublished in: Orphanet journal of rare diseases (2022)
This study provides a basis for the deployment, on the national level, of transition programs which include specific actions that patients view as priorities.