Transition from childhood to adulthood in neuromuscular disorders: results from the ERN EURO-NMD survey
Transition care for patients with NMDs in Europe remains fragmented and under-resourced. To ensure continuity and improve outcomes, structured, multidisciplinary transition models are needed. A European roadmap, coordinated by ERN EURO-NMD, could harmonise practices, support professional training, and guide policy development across member states.
Authors
- Teresinha Evangelista (ORCID: https://orcid.org/0000-0002-1329-9131)
- Charlotte Handberg (ORCID: https://orcid.org/0000-0002-1378-2449)
- Kristl G. Claeys (ORCID: https://orcid.org/0000-0001-9937-443X)
- Ulrike Schara‐Schmidt (ORCID: https://orcid.org/0000-0001-5833-2751)
- António Atalaia (ORCID: https://orcid.org/0000-0002-9345-0953)
- Isabella Moroni (ORCID: https://orcid.org/0000-0002-3322-1681)
- Marion Masingue (ORCID: https://orcid.org/0000-0001-5715-7410)
- Rosaline C. M. Quinlivan (ORCID: https://orcid.org/0000-0002-2306-4782)
- Houda Ali
- Thomas Sejersen (ORCID: https://orcid.org/0000-0001-5961-7097)
- Susana Quijano-Roy
Institutions
- Université de Versailles Saint-Quentin-en-Yvelines (FR)
- Aarhus University (DK)
- Université Paris-Saclay (FR)
- Hong Kong Science and Technology Parks Corporation (HK)
- Karolinska Institutet (SE)
- Sorbonne Université (FR)
- Assistance Publique – Hôpitaux de Paris (FR)
- Institut de Myologie (FR)
- UK Dementia Research Institute (GB)
- Hôpital Raymond-Poincaré (FR)
- Fondazione IRCCS Istituto Neurologico Carlo Besta (IT)
- University College London (GB)
- University of Duisburg-Essen (DE)
- KU Leuven (BE)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-12-09
- DOI
- https://doi.org/10.1186/s13023-025-04144-x
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 0.00