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Transition in Rare Diseases Workshop – A European approach towards minimal criteria in healthcare continuity
February 27th, 2026
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- Belgium
- ERN RARE-LIVER
- Rare Disease Day
Event information
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Location:
Monasterium PoortAckere, Ghent, Belgium
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Start Date:
February 27th, 2026
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End Date:
February 28th, 2026
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Event mode:
In-person
The Transition in Rare Diseases Workshop will gather representatives from all 24 European Reference Networks (ERNs) and key stakeholders to develop a European perspective on defining minimal criteria for healthcare continuity during the transition from paediatric to adult care. This is the first workshop organised by the ERN Overarching Transition Working Group, and will take place on 27–28 February 2026 in Ghent, Belgium.
The ERN Overarching Transition Working Group, coordinated by ERN RARE-LIVER and chaired by Ruth De Bruyne, leads a joint effort across all ERNs to provide a collaborative platform to share practices, experiences, and challenges, ensuring that transition processes are patient-centred, equitable, and feasible across the EU Member States.
The two-day workshop will provide a platform for discussion, knowledge exchange, and consensus-building on what constitutes effective and equitable transition care across rare diseases.
Each ERN will be represented by one paediatric healthcare provider, one adult healthcare provider, and one young patient representative from the ERN-wide Youth Panel (also established by the ERN Transition Working Group).
The workshop is also open to multidisciplinary stakeholders across ERNs, where each ERN will identify individuals with specialised knowledge and/or strong advocacy backgrounds. There will be emphasis on co-creation, ensuring voices beyond clinicians are included (i.e., patients, caregivers, policymakers, communication experts). This highlights the importance of involving policymakers, organisational experts, and patient advocates in the workshops plenary discussions.
