EpiCARE is the European Reference Network for all rare and complex epilepsies. The ERNs, launched in 2017, aim to improve care for rare diseases, reduce inequalities in access to the best diagnostic, treatment practices and investigational tools. They involve more than 900 highly specialised health care teams.
The ERN is composed by 61 medical teams of experts, accredited by their respective national authorities and the European Commission. It is present in 24/27 EU countries and in Norway. Supporting medical teams are present in Bulgaria, Greece, Ireland, Switzerland and in the UK.
In October 2023, the administrative coordination of EpiCARE was entrusted to the Hospital Sant Joan de Déu in Barcelona, under the leadership and coordination of Professor Dr. Alexis Arzimanoglou.
On behalf of all our members and patient advocates we are grateful to the European Board of the ILAE for the recognition of the teamwork developed by ERN EpiCARE the past 10 years, aiming to improve epilepsy care and research in Europe. ERNs today are a structured and functional ecosystem that can support national healthcare systems.
A new publication co-signed by the 24 coordinators of the European Reference Networks (ERNs) and DG SANTE highlights the key achievements of this major initiative of the European Union.
European Reference Networks (ERNs) connect expert centres across countries to share knowledge and improve care for patients with rare and complex diseases. They include 24 networks with over 1,600 centres in hospitals across the EU and Norway. The publication outlines their role in fostering collaboration, developing clinical guidelines, and strengthening patient-centred care across borders. It also provides a comprehensive overview of the ERNs activities since their creation.
The seventh edition of the “In Search of Lost Time 7” workshop will take place in Rome from 11 to 13 November 2026, at the Istituto Patristico Augustinianum. The event is organized by Italian epilepsy centres and endorsed by the International League Against Epilepsy and ERN EpiCARE, and the registration will open on 5 May.
ASM, to treat or not to treat
Speaker: Morten Lossius, Oliver Henning, Kristin Alfstad (National Centre for Epilepsy Oslo, Norway), Hajo Hamer (Universitätsklinikum Erlangen, Germany), Christoph Helmstaedter (Bonn University Hospital, Germany)
30/4/2026
The Genetic Research workgroup is sharing opportunities of collaborative calls for European series of patients carrying variants in already known genes, to facilitate this type of studies by connecting several centers across Europe involved in the study of genetic epilepsies.
Have a look at the calls for collaborative genetic research here, and contact Sébile Tchaicha, Research project manager, if you have any question.
A disease is defined as rare when it affects fewer than one in 2.000 people, is serious, chronic and often life-threatening. Between 5.000 and 8.000 of rare diseases affect daily life of around 30 million people in the EU.
The ERN EpiCARE brings together highly specialized health centres (38 full members and 12 affiliated partners) in 26 European countries with expertise in rare and complex epilepsies. If you are a healthcare professional and would like to refer a patient to us, or if you are a patient yourself, or a family member of a patient, please get in touch via our contact page.
The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks, and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access timely and adequate specialised healthcare. Read the open letter from the rare disease community here
Accessibility
To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
Developing treatment
To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
Awareness
To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
Education
To enhance educational activities and training opportunities across Europe by interchange across the network.
Collaborative research
To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
