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.
The High-Level Meeting on Rare Diseases 2025 at the European Parliament (Brussels) concluded after extensive work and productive discussions.
Alexis Arzimanoglou, Co-Director of ECET and ERN EpiCARE – Coordinator for Rare and Complex Epilepsies, attended the meeting. He participated in the discussion “Exploring new early access models to prioritise equitable access to innovative orphan therapies and diagnostics” and moderated the session “Prioritising an EU Action Plan and Mission on Rare Diseases that unifies the rare disease stakeholder community.”
An EU Declaration on the European Research and Innovation Ecosystem for Rare and Complex Diseases was developed and adopted.
Elena Gardella, Guido Rubboli, Rikke Moller are pleased to invite you to the 7th Dianalund International Conference on Epilepsy, taking place on 6–8 May 2026 in Køge, Denmark. This year’s meeting will focus on the latest advances in research, diagnosis, and treatment.
We encourage all participants to contribute by submitting abstracts for posters or oral presentations. Opportunities for oral presentations are available across several sessions, including: Preconference Innovation Session, Late-Breaking News Session, or Molecular Therapeutic Board Session. Abstracts should be sent to [email protected] before 15 March 2026, and and all further details can be found on the website. Sign up for the meeting here!
📢 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 5th Rome Debate on Developmental and Epileptic Encephalopathies addresses a key challenge in pediatric neurology: understanding and treating DEE in infants with Tuberous Sclerosis Complex (TSC). The meeting focuses on early identification of disease mechanisms and timely intervention to modify disease progression.
It will present updated insights into the physiopathology of TSC-related DEE and discuss emerging strategies to prevent or modify epileptogenesis. The event also promotes scientific debate and knowledge exchange, aiming to shape future directions in early diagnosis and treatment to improve developmental outcomes in affected infants.
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.
