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.
Monday, 9th February 2026, was Epilepsy Day, and it was a great success. Many EpiCARE member hospitals organized activities to raise awareness about epilepsy. Several of them shared their photos and experiences with the ERN, including Hospital Sant Joan de Déu (Barcelona), KU Leuven / UZ Leuven (Belgium), AP-HM Marseille (France), Hôpital Universitaire de Bruxelles (Belgium), HUS-Oulu ERNEpi Consortium (Finland), St. Anne’s University Hospital Brno (Czech Republic), The Cyprus Institute of Neurology & Genetics (Cyprus) and Sestre milosrdnice UHC, Zagreb (Croatia). Thank you all for your initiatives. You are a source of pride! 💜
This collaborative work brings together experts from multiple epilepsy-related disciplines across Europe, alongside patient advocates, highlighting the added value of European Reference Networks in fostering cross-border collaboration, advancing knowledge, and strengthening excellence in clinical care and research.
The paper has been shaped by the contributions of EpiCARE’s Working Groups and, for the first time, also includes an appendix listing all healthcare providers hosting an EpiCARE medical team. We hope this publication will inspire new ideas, partnerships, and innovative collaborative projects in epilepsy research and care.
📢 You can now request a certificate of attendance after registering for and attending the webinar! Please email the EpiCARE Helpdesk afterward, and we’ll send it to you: [email protected]
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 !
to regularly update neurologists and child neurologists on the best practices in epilepsy treatment.
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.
