European Reference Network for Rare Eye Disease
In December 2016 the European Reference Network Board of Member States approved the ERN for Rare Eye Disease – ERN-EYE.
This is an especially important achievement considering the involvement of patients from the outset of what was a complex application process.
The ERN-EYE is coordinated by Professor Dr. Helene Dollfus (Strasburg) and the network has 30 Health Care Providers (HCPs) as members in 13 countries. The development of ERN-EYE will lead to the improvement of diagnosis, care and treatment for all those living with Rare Eye Disease in Europe.
While the ERN-EYE has had full involvement of patients in the application stage though the ePAG – Patient Advocacy Group – in order to ensure there is appropriate representation of patients affected by Rare Eye Disease on governance boards of the ERN both centrally and locally, more patient representatives are needed.
Retina International would like to take this opportunity to ask patients representing paediatric ophthalmology, anterior segment, neuro ophthalmology and the retina to contact firstname.lastname@example.org to indicate if your organisation would be interested in hearing more about the ERN-EYE or if you are interested in participating in the process.
For further information on the ERN initiative log onto: https://ec.europa.eu/health/rare_diseases/european_reference_networks_en