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

18 full members & 6 affiliated partners countries

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.