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“See My Life”: an international multidisciplinary research project to assess the quality of life of children with visual impairment due to a rare eye disease. 1) Why this research? In Europe, rare eye diseases are the leading cause of severe visual impairment/blindness in children. This severe or total visual impairment…

The rare diseases covered by ERN-EYE are rare eye diseases. Almost all visual impairment, whether isolated or associated with another pathology (syndromic form) is of genetic origin. The scope of the network covers more than 900 diseases. Major families of pathologies : RETINAL DISEASE (retinal dystrophies) The entire retina is a disc about…

What about Rare Eye Diseases (RED)? What is ERN-EYE? ERN-EYE is a European reference network dedicated to Rare Eye Diseases. ERN-EYE covers 24 out of 27 EU countries, with 52 full members and 8 affiliated partners, across European Union to guarantee the best coverage of more than 900 Rare Eye Diseases. The coordinator is Pr Hélène Dollfus,…

Evaluation process held every 5 years Legal basis When the ERNs were established, it was agreed that an evaluation would be conducted every five years after their initial approval (or last evaluation) to determine the worth or significance of the work and actions developed by the ERNs. In 2022/2023, the…

Text source: European Commission  European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. Overview Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare…