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

RECENT NEWS

ARVO 2018 Annual Meeting, 29th April - 3rd May

Pr Hélène Dollfus, ERN-EYE coordinator, will do a presentation on "Ontology and Common Data Elements for Collaborative Research in Ophthalmology" during the ARVO meeting.

9th European Conference on Rare Diseases & Orphan Products

The ECRD will take place on 10 – 12 May in Vienna, Austria

Rare disease research: European reference networks are off to a good start

One year on from their launch, the European reference networks are helping patients access treatment and research from across the EU, writes Vytenis Andriukaitis.

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Disclaimer

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 http://ec.europa.eu/health/ern 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.