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European Reference Network for Rare Eye Diseases [ERN-EYE] [739534] - Framework Partnership Agreement
Project abstract

ERN-EYE will set up a European Reference Network for Rare Eye Diseases (RED). RED is a large group rare diseases, with great genetic and phenotypical heterogeneity, and with complex or non-existing therapies. All together RED represent the first cause of blindness in children and young adults. Patient groups are highly involved in stimulating innovation towards clinical trials. The medical care organisation in the field of RED has remained centred at a national level, thus creating inequalities in care. The mission of ERN-EYE is to bring together knowledge, new and existing resources and expertise across the EU to facilitate access to a better, multidisciplinary, safer, high-quality, cost-effective, and cross-border healthcare system for all the European citizens affected by RED.
The heart of ERN-EYE lies in the creation of a virtual Rare Eye Diseases Clinic: EyeClin. Eyeclin will encompass the main subspecialties with RED at the level of the retina, the anterior segment, paediatrics and neuropathology. Genetic testing will be a major transversal topic as well as low vision aids. Via EyeClin, the European healthcare providers will have access to the available EU resources, knowledge and expertise. Furthermore, ERN-EYE will share and spread information and knowledge within and outside the network, collaborating closely at national and international level. Main activities within ERN-EYE will include a dedicated training programme; clinical guidelines and best clinical practices; launching and support for registries for epidemiology surveillance, clinical trial empowerment; sharing of information about highly innovative genetic tests and bottom-up research projects.
Overall, ERN-EYE will be an EU hub aiming to deliver high quality and accessible healthcare for patients with an emphasis on rapid translation of medical progresses with the maximum coverage at the EU level.