VASCERN News
02 March 2026
ERN transition workshop defines European rare disease standards
Representatives from 22 European Reference Networks gathered in Ghent, Belgium, on 27–28 February 2026 for the first ERN-wide transition workshop on healthcare transition in rare diseases. The two-day event brought together paediatric and adult healthcare providers, and young patient representatives to develop practical recommendations and minimum standards of care for young people moving from paediatric to adult services.
Over two days, doctors, young patients, and healthcare experts worked side by side. They discussed real problems and developed practical solutions. Participants:
- Explored key challenges and opportunities in transition care across Europe
- Developed practical, actionable recommendations for healthcare systems
- Defined minimum standards of care for transition in rare diseases
- Identified tools and frameworks to support equitable care continuity
The workshop also hosted the first in-person meeting of the cross-ERN Youth Panel—young patient representatives from across all networks who brought invaluable lived experience to the discussions.
VASCERN was represented by two experts:
- Liesbeth Wildero Van Wouwe, UZ Ghent, Belgium
- Eduard Pellicer Arasa, Hospital Sant Joan de Déu Barcelona, Spain
Key insights from the workshop
Participants acknowledged both progress and ongoing challenges. Transition remains highly variable across European healthcare systems, with differences in procedures, quality standards, and monitoring mechanisms for individual transition plans.
Eduard Pellicer Arasa, one of VASCERN’s representatives, reflected on the workshop outcomes: “These were days of intensive work and constructive dialogue among European networks, professionals, patients and families, united by a shared objective: to advance towards common criteria that support a safe and structured transition from paediatric to adult care.”
He emphasised that effective transition requires more than individual team commitment: “It requires structure, evaluation and shared responsibility among professionals, hospitals, healthcare systems, patients and families.”
Drawing on experience from Hospital Sant Joan de Déu Barcelona’s A10! Programme, Pellicer highlighted the ongoing work to consolidate structured transition models: “The challenge is complex: building planned, measurable and truly person- and family-centred transitions.”
Looking ahead
The conclusions from this workshop will help define the path forward for transition care across all 24 European Reference Networks.
By strengthening common frameworks and sharing effective tools, the ERN community is working towards equitable care continuity for all young people with rare diseases, regardless of where they live in Europe.
The workshop represents the beginning of an ongoing collaborative effort led by the ERN Overarching Transition Working Group, coordinated by ERN RARE-LIVER.