It brought together close to 150 participants, mainly health care providers members and affiliated partners, ePAG members, as well as prestigious speakers.

The sessions were opened by Hélène Dollfus, coordinator of ERN-EYE. To introduce the meeting, Vytenis Andriukaitis, Former Health Commissioner, Birute Tumiene, Board of Member States Representative of Lithuania, and Enrique Terol, European Commission, Policy officer for ERNs, gave an overview of the current state of ERNs in Europe.

The first day was dedicated to the state of the art regarding guidelines and registry. During the first session, European and international experts presented the European framework and the planned schedule based on concrete examples. The second session was an opportunity to speak about the upcoming implementation of the ERN-EYE REDgistry, and the challenges ahead, especially regarding data protection.

The second day of the Virtual Meeting was dedicated to the affiliated partners. Today ERN-EYE has 15 affiliated partners in 7 countries not covered by full members. It was a great chance for them to introduce their centre and activities.

The meeting ended with a research session during which European calls, including European Joint Program for Rare Diseases (EJP-RD), specific call on humanities and research in rare diseases and the participation of ERN-EYE were presented. Finally, parallel sessions with the different working groups allowed to discuss key topics such as specific guidelines and e-learning.

This Virtual Meeting was successful, but we hope that the next workshop will be face-to-face!
The ERN Team

Network Coordinator

Professor Hélène Dollfus
Hôpitaux Universitaires de Strasbourg, France
Website: www.ern-eye.eu