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ERN-EYE, evropska referenčna mreža za redke očesne bolezni (angl. 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

Redke očesne bolezni (angl. Rare Eye Diseases, RED)

⇒ Vodilni vzrok za okvaro vida in slepoto pri otrocih in mlajših odraslih v Evropi

⇒ več kot 900 redkih očesnih bolezni (angl. Rare Eye Diseases, REDs)

⇒ Od najpogostejših bolezni, kot je retinitis pigmentosa (prevalenca je 1/ 5 000), do nekaterih zelo redkih stanj, v medicinski literaturi opisanih samo enkrat ali dvakrat

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 tematsko različne klinične delovne skupine

ERN-EYE obravnava ta stanja v štirih tematsko različnih skupinah:

Redke bolezni mrežnice
Redke nevrooftalmološke bolezni
Redke otroške očesne bolezni
Redke bolezni sprednjega očesnega segmenta

6 povezovalno usmerjenih delovnih skupin

Te skupine obravnavajo vprašanja, ki so skupna vsem štirim glavnim temam. Dodatne delovne skupine se osredotočajo na posamezna specifična področja

Slab vid, vsakodnevno življenje in skupine bolnikov
Genetska diagnostika
Registri in epidemiologija
Raziskovanje
Izobraževanje, usposabljanje in smernice
Odnosi z javnostjo, vodenje in kvaliteta

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

Learn more about ERN-EYE mission

Download the ERN-EYE brochure in your language