The first ERN-EYE workshop was held at Mont Ste-Odile in Alsace from 9 to 11 October 2017. It has been a full success with up to 60 participants : ERN-EYE members from all over Europe but also invited experts from Canada, Israel, Switzerland and the United States. Opened by the coordinator Hélène Dollfus, this workshop was dedicated to the revision of the Orphanet classification revision and HPO terms revision. This work was possible thanks a great cooperation of all key actors i.e.: Orphanet, HPO and RD-Connect.
The patient associations represented by Christina Fasser and Russel Wheeler opened the first part of the meeting with the patient perspective regarding ERN-EYE. Russel Wheeler in his talk illustrated what is the collaboration between medical team and patient groups. Later in the meeting, RdConnect, HPO and Orphanet presented their activities and the inputs they could provide to the ERN-EYE network.
The rest of the meeting was mainly devoted to working groups. Based on four major clinical themes, including retina pediatrics, neuro-ophthalmology or anterior segment, the groups aim to unite the capacities of its members according to their specialties. This curation work is crucial to build all e-Health tools needed in such a network.
The “Odile” workshop was ERN-EYE first achievement. As a matter of fact, to build common tools we had to agree on a common language. With this classification and a well-designed ontology, the building of an efficient IT platform and an EU-wide registry is now possible.
First assessment and next steps
The workshop was very successful and allowed major advances in the network's activities. It was also an opportunity to speak about communication, which became an important element of ERN-EYE in the last weeks. Indeed, a website (www.ern-eye.eu) was developed as well as the presence of the project on social networks (Linkedin and Facebook).
Finally, the Odile workshop gave also a chance to make an assessment of the first few months of ERN-EYE. Launched in April 2017, the network is composed of 29 health care providers in 13 EU countries. In those few months, the members could already demonstrate that they are able to make great progress together.
The ERN Team