Update on ERN-EYE 2023-2027 EU project and other ongoing European actions
The ERN-EYE General Annual Meeting 2025, held on 10-11 April 2025, in Kaunas, Lithuania, successfully brought together around 60 experts, members and patient representatives to discuss ERN-EYE activities and new initiatives at the European level. The event was hosted by Pr Reda Žemaitienė and her team, who provided a wonderful setting for two days of productive and pleasant discussions on strategic planning.
The meeting kicked off with working group sessions, fostering in-depth discussions on ongoing and future projects (webinars, guidelines, e-learning). The official programme was opened by the local host. On the first day, participants could explore the latest advancements within the scope of the ERN-EYE 2023-2027 project, including CPMS 2.0, registries, guidelines and communication tools, through live demonstrations and interactive exchanges with the management team.
Patient involvement took center stage during the ePAG session, where ePAG chairs Dominique Sturz and Petia Stratieva highlighted key achievements of the ePAG group. The day concluded with a wrap-up of working group discussions.
Shaping the Future of ERNs and European Joint Actions
The second day of the meeting opened with the governance board meeting, bringing together the representatives of ERN-EYE full members and patient representatives to discuss the network’s activities and financial situation for the past year. A positive assessment was made on the actions of ERN-EYE in 2024.
The rest of the meeting focused on the future of ERNs, with presentations on the JARDIN Joint Action and the European Health Data Space (EHDS). Discussions also covered RealiseD, an initiative aiming to transform clinical trial frameworks for rare diseases. The final session delved into ERNs and research, with updates on the ERDERA programme, new research opportunities and the strategic importance of mirror groups in international collaboration.
The ERN-EYE Annual Meeting 2025 reaffirmed ERN-EYE’s commitment to fostering innovation, knowledge sharing, and patient-centred research, ensuring better care for those affected by Rare Eye Diseases across Europe.
