Endo-ERN invites patients and families to take part in a new survey on transition of care, aimed at better understanding how young people with rare diseases experience the move between paediatric and adult healthcare services.

Transition is a critical period that can strongly influence long-term health outcomes and patient wellbeing. Through this survey, the Overarching ERN Transition Working Group seeks to capture real-life experiences from across Europe, ensuring that future improvements to transition pathways are informed directly by those who live through them.

About the survey

• Available in 10 EU languages

• Takes approximately 5–10 minutes to complete

• No age limit — the questionnaire adapts automatically for respondents who are pre-transition, in transition, or post-transition

• Focuses on the lived experience of transition, from the patient perspective

The survey responses will play a key role in shaping ongoing work on transition of care within European Reference Networks and will contribute to identifying gaps, good practices, and areas for improvement.

Link available if you would kindly complete and share within your network.