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 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: