As part of the EACD/IAACD 2025 conference – held in Germany for the first time – an interdisciplinary symposium addressed the transition of young people with Duchenne Muscular Dystrophy (DMD) from pediatric to adult care. Experts from Germany, Italy, Canada, and Israel presented country-specific challenges, care strategies, and findings from current research projects.
The program focused on results from the EU-funded GrowDMD consortium (2022–2025), which used qualitative and quantitative methods to explore the experiences of adolescents with DMD, their families, and healthcare professionals across three countries. These insights were complemented by an Israeli-Canadian study on participation in everyday life, school, and work, as well as by clinical case examples.
A key takeaway: Transition is most successful when medical, psychosocial, and structural support are integrated—and when the perspectives of affected individuals are actively included. The presented approaches offer important impulses for improving international care structures and may serve as models for other rare diseases.
