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ERN-EYE, a European Reference Network dedicated to Rare Eye Diseases

Rare Eye Diseases display major heterogeneity and represent the leading cause of visual impairment/visual loss in children & young adults. Significant barriers remain for early diagnosis, patient management & research. EU experts decided to join forces in a European Reference Network.

 ERN-EYE, 29 members in 13 countries across European Union

 to guarantee the best coverage of more than 900 Rare Eye Diseases


- Coordinator: Pr Hélène Dollfus, Hôpitaux Universitaires de Strasbourg, France


- 29 Healthcare Providers are full members of ERN-EYE


- All members were approved by their national authority and positevely assessed by a independant body


ERns Goals: 1.Improve patient trajectory in the EU ⇒ Virtual clinic 2.Reduce inequalities of patient care in the EU 3.	Reduce the time to diagnosis and care 4.Bring diagnosis to the undiagnosed 5.Ensure molecular diagnosis to the largest number of patient

 European reference networks

For rare, low-prevalence and complex diseases


European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources. Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions. Between 5.000 and 8.000 rare diseases affect the daily lives of around 30 million people in the EU.


Carte Europe HCPs

Check out more information about ERNs: ERNs press release / ERNS brochure / ERNs flyer / ERNs memo.




About the ERN initiative



Launch of the Latvian Rare disease coordination center

February 28, 2018 was not only the International Rare Disease day, but also a very important day for all Latvian health system, medical society and patients. 

Read more about: Launch of the Latvian Rare disease coordination center
Rare Disease Day 2018

ERN-EYE was represented in several events, including Strasbourg and Paris. 

Read more about: Rare Disease Day 2018
Training Workshop on Rare Diseases Registries

ERN-EYE members participated to the Training Workshop on Rare Diseases Registries in Baveno, Italy, on 8th and 9th of February

Read more about: Training Workshop on Rare Diseases Registries


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ERN-EYE is a European Reference Network (ERN) approved by the ERN Board of Member States. The ERNs are supported by the European Commission. For more information about the ERNs and the EU health strategy, please visit The content on this website represents the views of the network and is its sole responsibility; it can in no way be taken to reflect the views of the European Commission or any other body of the European Union.

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This ERN is supported by: