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

What about Rare Eye Diseases (RED)?

  • Rare Eye Diseases (RED) are the leading cause of visual impairment and blindness for children and young adults in Europe
  • There are more than 900 REDs 
  • From the most prevalent diseases such as retinitis pigmentosa (estimated prevalence of 1 in 5 000) to some very rare entities described only once or twice in medical literature

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, Hôpitaux Universitaires de Strasbourg, France.

All members were approved by their national authority and positevely assessed by an independent body.

There are 4 working groups (WG) and 6 transversal working groups (TWG)

WG1: Retinal Rare Eye Diseases

WG2: Neuro-Ophthalmology Rare Diseases
WG3: Paediatric Ophthalmology Rare Diseases
WG4: Anterior Segment Rare Eye Diseases
TWG5: Low Vision, Daily Life and Patients Groups
TWG6: Genetic Diagnostics
TWG7: Registries & Epidemiology
TWG8: Research
TWG9: National Integration
TWG10: CPMS & Digital Medicine


52 full members & 8 affiliated partners 

Full members

  • Belgium
  • Czech Republic
  • Denmark
  • Estonia
  • Finland
  • France
  • Germany
  • Ireland
  • Italy
  • Latvia
  • Lithuania
  • Netherlands
  • Poland
  • Portugal
  • Romania
  • Slovenia
  • Spain
  • Sweden

Affiliated partners

  • Austria
  • Croatia
  • Luxembourg
  • Hungary
  • Malta
  • Slovakia

What are ERN-EYE's Goals?


Improve patient trajectory in the EU : Virtual clinic


Reduce inequalities of patient care in the EU


Reduce the time to diagnosis and care


Ensure molecular diagnosis to the largest number of patients in the EU


Bring diagnosis to the undiagnosed


Facilitate involvement of patients in clinical trials


Give access to innovation


Provide tools for education and communication


What is the clinical virtual care?

The Network main aim is the development of a virtual clinic to facilitate cross-border dissemination of expertise. The Clinical Patient Management System (CPMS) was launched by the European Commission (DG SANTE) in November 2017. It’s a web-based application where healthcare professionals from the European Reference Networks (ERNs) can discuss real patient cases. This platform aims at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe.

The Network main aim is the development of a virtual clinic to facilitate cross-border dissemination of expertise.

More information about the CPMS (virtual clinic)

What are ERN-EYE's working topics?

4 clinical thematic working groups

  • Working group 1: Retinal rare eye diseases
  • Working group 2: Neuro-ophthalmology rare diseases
  • Working group 3: Paediatric ophthalmology rare diseases
  • Working group 4: Anterior segment rare eye diseases

6 transversal working groups

  • Transversal Working group 5: Low vision, daily life and patient group
  • Transversal Working group 6: Genetic diagnostics
  • Transversal Working group 7: Registries & epidemiology
  • Transversal Working group 8: Research
  • Transversal Working group 9: National Integration
  • Transversal Working group 10: CPMS & Digital Medecine



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This ERN is supported by: