01 April 2019


News from the European Reference Network ERN-EYE Team


ERN-EYE organized its 3rd General Annual Meeting from March 21st to 22nd in Prague, Czech Republic. It gathered nearly 70 people from the HCPs of the 13 member countries of the network, as well as invited speakers.

Opened by Pr Hélène Dollfus, coordinator of ERN-EYE, Dr Petra Lišková, our local host, representative of the General University Hospital (GUH) in Prague, member of ERN-EYE, and Pr Tomáš Zima, Rector of the GUH, the meeting was the opportunity to discuss the issue of being a member of the ERN-EYE network and the responsibilities, benefits and added value. Hélène Le Borgne, DG SANTE, European Commission, explained what is expected from  ERN members and the monitoring of ERNs. This reminder was particularly important to ensure a continuous assessment of the network. Christina Fasser, ePag representative, gave the position of the patients on this topic.

The central part of the meeting was dedicated to the third 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 2018 could be made: the main objectives have been achieved or are in progress and new projects will be launched very soon. These projects are part of the 2019 objectives that the board has approved; among them to continue the production of guidelines, to assess the use of the Clinical Patient Management System (CPMS), especially using the ERN-EYE dedicated dataset recently released, and to launch the e-learning program. The future call for new membership has been discussed as well during this board.

Registries and Guidelines stay major goals for ERN-EYE in 2019

The second part of the meeting was devoted in particular to the research with Hélène Le Borgne who gave the views of the EU and some ERN-EYE members who presented their work into the ERN-EYE transversal working group “Research”.

As a red line, a great part of the meeting was dedicated to the CPMS with the presence of Dr Laura Mauring, ERN-EYE MD fellow 2018-19, ophthalmologist, and Francesco Rotolo, IT specialist, who constitute the new ERN-EYE CPMS Helpdesk.

Finally, a large place has been given to the registries with Pr Hélène Dollfus who mentioned the strategy and the planning for the coming year and to the e-learning with Dorothée Leroux, ERN-EYE Project Manager, who talked about the strategy, the program and the timeline.

This meeting made it possible to fix the goals for the year 3 of ERN-EYE and allowed to present all the ongoing actions of the network.

With thanks to the ERN Team


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