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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: Pediatric 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 Medecine

 

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?

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

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

5

Bring diagnosis to the undiagnosed

6

Facilitate involvement of patients in clinical trials

7

Give access to innovation

8

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


 

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This ERN is supported by: