ERN-EYE organized its 6th General Annual Meeting from April 25th to 26th in Amsterdam, Netherlands. It gathered nearly 80 people from the HCPs of 17 member countries of the network, as well as invited speakers.

Opened by Pr Hélène Dollfus, coordinator of ERN-EYE and Pr Camiel Boon, our local host, representative of the Amsterdam University Medical Centers, member of ERN-EYE, the meeting started with a discussion on the goals of ERNs in the next years with representatives of the European Commission. Andrzej Jan Rys, DG SANTE, European Commission, reminded of the importance of ERNs in Europe and particularly in the current context of war on the doorstep of the European Union. Martin Dorazil, DG SANTE, European Commission, explained the cross border health directive that is the founding stone of ERNs. Russell Wheeler, ePag representative, gave the position of the patients on this topic.

Registries and Guidelines stay major goals for ERN-EYE in 2023

The central part of the meeting was dedicated to the governance board bringing together the representatives of ERN-EYE full members and patient representatives. During this board, a positive assessment of the actions of ERN-EYE in 2021 could be made: the main objectives have been achieved or are in progress and new projects will be launched. These projects are part of the 2023 objectives that the board has approved: among them to continue the production of guidelines, to use more the Clinical Patient Management System (CPMS) and to finalize the e-learning program.

The rest of the meeting was devoted in particular to the question of the crucial need for collecting data from Rare disease patients in Europe: the importance of registries in Europe, the experience of ERN ERKnet and the presentation of the progress of the ERN-EYE registry (REDgistry). The Clinical Patient Management System CPMS was also discussed with the presence of Joao De Sousa and Michèle Foucart, from the European Commission, who gave a view of the new version of the system.

This meeting was also the opportunity to speak about national integration and ERN research projects (EJP-RD, ERICA). Finally, several ERN-EYE working groups had the chance to meet in parallel sessions.

Above all, this meeting made it possible for the 28 new ERN-EYE members to introduce themselves and to meet (finally in person!) the rest of the network.