Transition in Rare Diseases Workshop, 27-28 February 2026, Ghent, Belgium

This workshop will convene experts, patients, and stakeholders from across Europe to shape collaborative standards for the transition of rare disease care from pediatric to adult care.

In February 2026, experts, patients, and stakeholders from across Europe will come together in Ghent for the Transition in Rare Diseases Workshop, a two-day meeting dedicated to improving continuity of care from paediatric to adult services for people living with rare diseases.

Organised by the ERN Overarching Transition Working Group, coordinated by ERN RARE-LIVER and chaired by Ruth De Bruyne, this first-of-its-kind workshop will bring together representatives from all 24 European Reference Networks (ERNs) to:

- Develop a shared European perspective on minimal criteria for effective transition care
- Exchange best practices, experiences, and challenges across rare diseases
- Strengthen patient-centred, equitable, and feasible transition pathways across EU Member States

Each ERN will be represented by pediatric and adult healthcare providers, as well as a young patient representative from the ERN-wide Youth Panel, ensuring true co-creation and inclusion of patient voices.

Look out for updates HERE!

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