Advocacy Communications | 06 April 2018

ERN-EYE Annual General Meeting - Tallinn

The ERN-EYE organized its third meeting on March 26th to 27th in Tallinn, Estonia. The Annual General Meeting was attended by 60 people from Health Care Providers (HCP) from the 13 member countries in the network, as well as invited speakers.

Hélène Dollfus, coordinator of ERN-EYE and Artur Klett, the local host, representative of the Eye Clinic of East Tallinn Central Hospital, opened the meeting and highlighted the opportunity to present the main achievements of 2017. Christina Fasser, who is one of the European Patient Advocacy Group (ePAG) representatives, presented the patient’s perspective regarding ERN-EYE. 

A governance board bringing was held together with the representatives of ERN-EYE full members and patient representatives. Patintes are represned on he Governance Board by Christina Fasser of RI and Russell Wheeler of LHON UK. During this board, a positive assessment of the first year of existence of ERN-EYE was made: the main objectives of 2017 were achieved and new projects will be launched. These projects are part of the 2018 objectives that the board has approved; among them is the production of guidelines, the use of Clinical Patient Management System (CPMS) or the creation of an e-learning program.

Registries and Guidelines: major goals for ERN-EYE

The rest of the meeting was devoted to the CPMS with Caroline Paquier, Project Manager ERN at the European Commission, presenting the objectives of the online platform and Hany Mina, Project Manager of CPMS at Openapp,  demonstrating the available functionalities of the system.  Simona Martin, from the European Commission for the Joint Research Center. discussesd registries The following day, Victoria Hedley, RD-Action Policy Manager, presented the results of a RD action workshop on guidelines that took place on 6th and 7th December 2017 at Istituto Superiore di Sanita in Rome, Italy, with all ERNs and which allowed answering many questions about this crucial matter for all the Rare Disease Community.

In addition to the plenary sessions, nine ERN-EYE working groups were able to meet and define their roadmap for the coming months. Among their goals, registries and guidelines were identified as the most important ones. Finally, the meeting ended with a wrap up of the conclusions of all the working groups.

This meeting made it possible to fix the goals for the second year of ERN-EYE and allowed  an active collaboration to continue within the overall network and the working groups. The result of the progress of the work will be presented during the next meeting, a workshop dedicated to genetic testing, that will be held in Florence from the 10th to the 12th October 2018.

 

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