ERN-EYE - European Reference Network for Rare Eye Diseases

Rare Eye Diseases (RED) are the leading cause of visual impairment and blindness for children and young adults in Europe. More than 900 REDs are listed in the portal for rare diseases and orphandrugs (ORPHANET).These include more prevalent diseases such as retinitis pigmentosa which has an estimated prevalence of 1 in 5000, as well as some very rare entities described only once or twice in medical literature.
ERN EYE addresses these diseases in four thematic groups: rare diseases of the retina, neuro-ophthalmology rare diseases, paediatric ophthalmology rare diseases, and rare anterior segment conditions. In addition, six transversal working groups are addressing issues common to the four main themes, like as low vision. 
Additional working groups focus onspecific areas, including genetic testing, registries,research, education, communication and patients.
The network’s main aim is the development of a virtual clinic — known as EyeClin — to guarantee the best coverage of REDs and facilitat ecross-border dissemination of expertise.