European Reference Network for rare and complex epilepsies coordinated in Lyon

Published on 02-11-2020
The HCL, represented by Prof. Alexis Arzimanoglou, were designated in March 2019 as coordinator of EpiCARE, the European Reference Network for rare and complexe epilepsies.

Prof. Arzimanoglou is Head of Clinical Epileptology, Sleep Disorders and Functional Child Neurology at the Hospital Femme Mère Enfant in Lyon.

EpiCARE in a few words

The European Reference Networks (ERNs) were born in order to provide answers to the treatment and care interruptions of patients with rare diseases. Among them EpiCARE, bringing together 43 highly specialised healthcare providers in 23 European countries, was labelled by the European Commission in 2017. This network aims to help rare epilepsy patients for whom a sharing of expertise between several European specialists contributes to an adapted diagnosis and treatment. EpiCARE offers online exchanges between experts from different countries, providing patients with the best care possible. The members also develop innovative research projects, teaching tools and treatment recommendations. They raise awareness and share information with local healthcare providers in their home countries to disseminate knowledge as widely as possible. So that, in the end, care and information travels, not the patient.

The EpiCARE 3rd General Assembly, in Lyon, on the 14th and 15th of February 2020

The 3rd General Assembly of EpiCARE will take place in Lyon on February 14 and 15 and represents an important milestone for the network. Bringing together around a hundred professionals, this annual meeting will provide an opportunity to share and assess the work of all teams and patient associations involved. The next orientations of the network will be defined as well as concrete objectives. On the agenda for the year 2020, among other things, the development of educational and training activities for young doctors; but also the creation of an online registry gathering relevant data of patients with rare epilepsy in Europe. The aim of this registry is to offer innovative diagnostic tools and treatments for the benefit of as many patients as possible.

HCL participation in the ERNs

In addition to the EpiCARE coordination, 17 teams in the Hospices Civils de Lyon are involved in "European Reference Networks" dealing with topics such as rare cancers, genetics and rare paediatric pathologies.  This labeling by the European Union and the networks confirms Lyon's expertise in these rare pathologies and marks recognition of the quality of care and the level of research of the professionals involved.