European Reference Networks

European Reference Networks (ERNs) are virtual networks that connect patients, clinicians and researchers across Europe. They provide the infrastructure for sharing knowledge about rare diseases across borders, to bring the expertise to the patient, no matter where they live.

There are between 6,000 and 8,000 classified rare diseases, which can mean that on an individual country basis, there can sometimes be poor knowledge or capacity to deliver accurate diagnosis and effective care for every single rare disease.

This is the particular value of ERNs: they bring together rare disease expertise through virtual platforms, providing patients with access to diagnosis and transformative care, without the burden of long-distance travel. ERNs also facilitate research, by linking researchers and healthcare systems to clinicians and patients, expediting innovation, access to knowledge and the development of new treatments.

There are currently 24 thematic ERNs, involving around 20,000 healthcare professionals in 300 centres of excellence across 26 EU Countries. They are already delivering substantial benefit to many people in the EU living with a rare disease.

ERN-EYE

ERN-EYE is a European Reference Network dedicated to rare eye diseases. Rare eye diseases represent the leading cause of visual impairment/visual loss in children and young adults. ERN-EYE, currently has 29 members in 13 countries across the European Union to guarantee the best coverage of more than 900 rare eye diseases.

The ERN-EYE has the following objectives:

  • Facilitate improvement in diagnosis and delivery of health care: by electronic strategies developed in a virtual eye clinic including diagnostic, genetic and care expertise.
  • Facilitate mobility of expertise: by producing guidelines, EU wide training/education programme, sharing expertise in the eye clinic system with EU experts.
  • Exploit innovations in medical science and health technology: by empowering clinical trials and by patient centred approaches for research.
  • Reinforce research and epidemiological surveillance: by the design and use of an ERN-EYE registry and by bottom-up research projects generated or stimulated by ERN-EYE.
  • Help member state(s) with insufficient number of patients: by promoting affiliated partners with full access to the ERN-EYE services, by the use of Eye Clinic eventually facilitating cross border referral, by exchanges and training/education programmes.