The European Reference Network on Neuromuscular Diseases (ERN EURO‑NMD) is conducting a Europe‑wide anonymous survey to better understand how young people with neuromuscular diseases (NMD) experience the transition from paediatric to adult care.
We want to hear your experiences – what worked, what was challenging, and what could be improved. Your input will help identify current practices, challenges, and opportunities for better care across Europe, and help make your voices heard.
If you are aged 12–25 and have transitioned—or are transitioning—from paediatric to adult care, or if you are a parent, we invite you to participate. If you are older, but would like to share your experiences, we welcome your input as well.
The survey takes about 15 minutes to complete and is open until 8 March 2026.
The survey is available in several languages. Although translated carefully, some terms may not fully match local healthcare contexts. In that case, please use the option “other” to explain your situation.
👉 Questionnaire on transition from paediatric to adult care (EN)
BG • CS • DE • EL • ES • FR • IT • NL • NO • PL • PT • RO (soon) • UK
Thank you for helping improve care and quality of life for people with NMD!