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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 is constituted of 29 health care providers (HCP) in 13 full members countries and 15 HCPs in 7 affiliated partners countries 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.
WG1: Retinal Rare Eye Diseases
|WG2: Neuro-Ophthalmology Rare Diseases|
|WG3: Pediatric Ophthalmology Rare Diseases|
|WG4: Anterior Segment Rare Eye Diseases|
|TWG5: Low Vision, Daily Life and Patients Groups|
|TWG6: Genetic Diagnostics|
|TWG7: Registries & Epidemiology|
|TWG9: Education, Training and Guideline Frame|
|TWG10: Communication, Management & Quality|
13 founding & 7 affiliated partners countries
- Czech Republic
- United Kingdom
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.
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: Education,training & guidelines
- Transversal Working group 10: Communication, management & quality
This ERN is supported by: