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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.

 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. 


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



About the ERN initiative

ERN-EYE member simple map 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



  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 patients in the EU
  6. Facilitate involvement of patients in clinical trials
  7. Give access to innovation
  8. Provide tools for education and communication


About ERN-EYE mission



ERN-EYE member honoured by the Queen

Professor Graeme Black, chair of TWG6 "Genetic Diagnostics" of ERN-EYE, has been recognised by Her Majesty the Queen in her Birthday Honours list.

Read more about : ERN-EYE member honoured by the Queen

The European Rare diseases Networks (ERN) have been launched in spring 2017 and aim to improve care for patients with rare diseases. The ERN-EYE network is dedicated to rare eye diseases and...

Read more about : ERN-EYE ODILE ONTOLOGY WORKSHOP 9th-11th October
Kick-Off Meeting in Tuebingen, Germany from April, 3rd to April, 5th, 2017

Professor Hélène Dollfus opened the first meeting of the European Reference Network ERN-EYE, which officially launched the work of 29 health care providers from 13 European member...

Read more about : Kick-Off Meeting in Tuebingen, Germany from April, 3rd to April, 5th, 2017


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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: