The 10th General Annual Meeting of ERN-EYE took place on 13-14 April 2026 in Helsinki, Finland, bringing together 80 experts, members, and patient representatives from across Europe.
Hosted by Dr. Joni Turunen and his team, the event fostered meaningful exchanges and strengthened European cooperation in the field of Rare Eye Disease care.
The meeting opened with a warm welcome from Jukka Moilanen, Head of the Department of Ophthalmology at Oak Hospital in Helsinki and Tero Kivelä, Professor of Ophthalmology at the University of Helsinki. This was followed by a presentation from Helena Kääriäinen, Research Professor, about the past, present and future of European Reference Networks (ERNs), and Hana Horka, Head of Unit at DG SANTE, European Commission, who shared updates about the future of ERNs, including the ERNs evaluation process.
The ERN-EYE management team followed presenting key highlights from the past year, new developments in communication, training programmes and key updates on the Clinical Patient Management System (CPMS); as well as the status of guidelines and care pathways. These activities highlight ERN-EYE’s commitment to improving cross-border care for rare eye diseases, while enhancing awareness and training among healthcare professionals.
An important moment of the day was the ePAG session, which emphasized the role of patient representatives within ERN-EYE. Dominique Sturz and Petia Stratieva presented an overview of the group’s major achievements in 2025, along with their priorities and outlook for 2026. The session also featured an engaging discussion with Prof. Bart Leroy and Prof. David Keegan on REDgistry, the European registry dedicated to rare eye diseases, a vital tool for advancing research and improving patient care pathways.
The first day concluded with a guided tour of Oak Hospital.
The second day opened with parallel working group meetings aimed at advancing ongoing ERN-EYE initiatives and strengthening collaboration. The programme continued with updates on ORPHANET and the revision of the Human Phenotype Ontology (HPO). This was followed by a session dedicated to the evolving rare disease landscape, featuring updates on ERDERA, RealiseD, and EVICR.net activities. The day concluded with an open discussion, encouraging exchange among participants on these key developments.
The 2026 ERN-EYE General Annual Meeting successfully reinforced collaboration, knowledge sharing, and patient-centered initiatives across Europe, laying strong foundation to continued progress in care, research, and treatment for rare eye diseases.
