European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources. Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions. Between 5.000 and 8.000 rare diseases affect the daily lives of around 30 million people in the EU.
ERN-EYE, dedicated to Rare Eye Diseases (RED), currently consists of 29 healthcare-providers from 13 Member States, with important interactions with patient groups and will cover RED conditions in four thematic groups: retinal RED, neuro-ophthalmology RED, pediatric ophthalmology RED & anterior segment RED; six transversal working groups are addressing common issue (genetic diagnosis, registries, research, training guidelines…).
The Scientific Project Manager will work under the responsibility of the Chief of department & ERN-EYE Coordinator, (Pr Hélène Dollfus) and in close collaboration with ERN-EYE Project Manager as well as the other members of the ERN-EYE management team. He/she will be also involved with the team coordinating national network for rare sensorial diseases SENSGENE based also in Strasbourg.