Transition in Rare Diseases – Successful ERN Workshop in Ghent

On 27 and 28 March, ERN RARE‑LIVER coordinated the first ERN overarching workshop on Healthcare Transition in Rare Diseases in Ghent. The event brought together young patient representatives and healthcare providers from 22 ERNs to address the need for safe, structured and person‑centred transition from paediatric to adult care.

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The two‑day programme combined plenary presentations with interactive workshops supported by service design experts. Participants explored current barriers, exchanged experiences and began shaping practical recommendations and minimum standards of care. A key milestone was the official founding of the cross‑ERN youth panel, whose first in‑person meeting added essential lived experience and perspective to the discussions.

Among the many challenges raised, participants repeatedly emphasised issues related to access to care and continuity of care. Several priority actions stood out across groups, including the need for clearer and more timely information (who, when, what, where), stronger peer support and mental health resources for young people and improved education of healthcare professionals, particularly regarding awareness and communication with AYAs. Discussions on implementation highlighted national system barriers and the recurring obstacle of limited time to deliver structured transition care.

The workshop created strong momentum for continued collaboration across the ERNs. The upcoming online meetings will build on this foundation and help translate these shared insights into concrete, sustainable actions for young people with rare diseases across Europe.