ERN ReCONNET participates in the Transition in Rare Diseases Workshop in Ghent
ERN ReCONNET actively contributed to the Transition in Rare Diseases Workshop, held on 27–28 February 2026 in Ghent, Belgium.
ERN ReCONNET was represented by Edoardo Marrani, Chiara Baldini, and Coralie Bouillot, who contributed to the cross-network dialogue and collaborative work toward improved transition care for people living with rare and complex connective tissue and musculoskeletal diseases.
Organised by the ERN Overarching Transition Working Group and coordinated by ERN RARE-LIVER, the workshop was conceived as a multistakeholder meeting gathering young people with rare diseases, paediatric and adult healthcare providers, researchers, policy advisors, and project managers from 22 European Reference Networks. The initiative was held in the context of Rare Disease Day activities and aims to strengthen collaboration across ERNs toward a shared European approach to effective transition care.
Why this workshop matters
Despite the existence of transition programmes in several centres, sustainable and harmonised implementation across Europe remains limited. The workshop therefore aimed to align transition efforts across ERNs, share best practices, and develop common standards to improve continuity of care for young people with rare diseases moving from paediatric to adult health services.
Over the two days, participants engaged in plenary discussions and interactive subgroup work focused on four key themes:
- communication
- education
- organisation of care
- psychosocial wellbeing
These sessions provided a structured environment for discussion, knowledge exchange, and consensus-building on what constitutes effective and equitable transition care across rare diseases.
Towards common European criteria
The outcomes of the workshop will contribute to the development of ERN minimal criteria for transition of care applicable across different healthcare settings. Particular attention was given to ensuring that these criteria and recommendations will be practical and feasible to implement in real-world clinical contexts.
The workshop also sought to strengthen alignment between patient and healthcare provider needs, organisational processes, and policy considerations, while enhancing collaboration among ERNs.
The ERN Overarching Transition Working Group—coordinated by ERN RARE-LIVER and chaired by Ruth De Bruyne—continues to lead joint efforts to ensure transition processes are patient-centred, equitable, and feasible throughout Europe.
