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Launch of the European Reference Network ERN EYE

Kick-Off Meeting in Tuebingen, Germany from April, 3rd to April, 5th, 2017

Professor Hélène Dollfus opened the first meeting of the European Reference Network ERN-EYE, hosted at the Institute of Ophthalmic Research in Tuebingen, Germany, which officially launched the work of 29 health care providers from 13 European member states.

Rare Eye Diseases (RED) are the leading cause of visual impairment and blindness for children and young adults in Europe. More than 900 REDs are listed in the portal for rare diseases and orphan drugs (ORPHANET). These include more prevalent diseases such as retinitis pigmentosa which has an estimated prevalence of 1 in 5 000, as well as some very rare entities described only once or twice in medical literature. ERN EYE addresses these conditions in four thematic groups: rare diseases of the retina, neuro-ophthalmology rare diseases, paediatric ophthalmology rare diseases, and rare anterior segment conditions. In addition, six transversal working groups are addressing issues common to the four main themes. Additional working groups focus on specific areas, including genetic testing, registries, research, education, communication and patients.

The network’s main aim is the development of a virtual clinic — known as EyeClin — to guarantee the best coverage of REDs and facilitate cross-border dissemination of expertise.

ERNs in brief

European Reference Networks (ERNs) are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases.

ERNs are virtual networks bringing together healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources. They are being set up under the EU Directive on Patients' Rights in Healthcare (2011/24/EU), which also makes it easier for patients to access information on healthcare and thus increase their treatment options.

In practice, ERNs will develop new innovative care models, eHealth tools, medical solutions and devices. They will boost research through large clinical studies and contribute to the development of new pharmaceuticals, and they will lead to economies of scale and ensure a more efficient use of costly resources, which will have a positive impact on the sustainability of national healthcare systems, and for tens of thousands of patients in the EU suffering from rare and/or complex diseases and conditions.

The ERNs will be supported by European cross-border telemedicine tools, and can benefit from a range of EU funding mechanisms such as the "Health Programme", the "Connecting Europe Facility" and the EU research programme "Horizon 2020".

Network Coordinator

Professor Hélène Dollfus
Hôpitaux Universitaires de Strasbourg, France
E-mail: ern.eye.project[at]