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.
Dear Colleagues
Seeking groundbreaking solutions to improve the diagnosis, monitoring, and treatment of rare epileptic conditions in children. The Key Challenges are: AI-driven neuroimaging for surgical planning, Early detection and management of cognitive impairments and Personalised dosage adjustment for anti-seizure medications.
One selected project will receive up to €10,000 to run a Proof of Concept pilot in collaboration with EpiCARE, plus strategic mentorship from the Innovation Department of Hospital Sant Joan de Déu Barcelona. The Deadline is 30, November 2025, 23:59 CEST. Apply now!
📢 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]
From 11th to 13th November, the “In Search of Lost Time 6” workshop was held at the Istituto Patristico Augustinianum in Rome. This year’s edition covered topics such as fever-induced epilepsies, gene therapy in DEEs, and artificial intelligence. For the first time, patient representatives participated directly in all three topics and were actively involved in every session. The event concluded with presentations by early-career researchers, two of whom were supported by EpiCARE. The dates for next year’s edition will be announced soon!
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.
