Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs)
Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe.
On behalf of the ERN Overarching Transition Group led by ERN RARE-LIVER, we invite you to participate in a Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs)
The survey aims to understand how young patients with rare and complex conditions are transitioned from paediatric to adult care, and how care is transferred.
Your input is extremely valuable-even if you currently have no formal practices or direct experience with transition and transfer procedures. We aim to learn from all perspectives across the ERNs to build a comprehensive understanding of current realities, gaps, and needs. All responses will be treated confidentially and will help guide improvements in cross-border, age-appropriate care for people living with rare diseases in Europe.
Take the survey HERE. Please ensure only one response is submitted per centre. The survey includes the 27 countries in the EU - all other participants from countries not included in the European Union can select the option "ID49 - Other".
Let's shape better, age-appropriate, cross-border care for people living with rare diseases across Europe. Thank you for contributing!
