EpiCARE: a European Reference Network for rare and complex epilepsies
The European Reference Networks (ERNs) were launched in 2017. They involve more than 900 highly specialised health care teams, located in more than 300 hospitals in 24 European countries and in Norway. The main mission of the ERNs is to help patients with rare or low-prevalence complex diseases, and to shape healthcare systems and national networks.
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
The objectives of the EpiCARE network
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.
Agenda
The “LGS Unveiled: Navigating Lennox-Gastaut Syndrome Together” event in Genoa is a pivotal gathering dedicated to understanding and managing Lennox-Gastaut Syndrome (LGS) and related developmental and epileptic encephalopathies (DEEs). This event will unite internationally renowned experts, medical professionals, families from the LGS Association, all working together to unravel the complexities of LGS. We’ll discuss medical and patient needs, explore the patient journey for those affected by LGS, and identify ongoing challenges.
The AES Annual Meeting brings together healthcare providers, scientists, advocates, industry, and other professionals dedicated to better outcomes for people with epilepsy. Information about AES 2024 will be available soon.
The ERICA ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy. The aim of the ERICA consortium, in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
We are delighted to announce that Rome, the eternal city, will once again welcome us for the 5th edition of the Workshop “In Search of Lost Time 5”. The nearly final program is now available and registrations are open (number of places limited).
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
On February 6th and 7th, 2025, the International Symposium: Neurodevelopmental Syndromes and Movement Disorders, endorsed by ERN EpiCARE, will be held in Barcelona (Spain). The aim of the event is to continue collaborative activities between professionals interested in neurodevelopmental syndromes and movement disorders. Sign up, and do not miss the chance to showcase your work at the International Symposium. Registration (Deadline December 16th) / Abstract submission (Deadline December 5th)
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
Explore the preliminary program for the 3rd Conference on Artificial Intelligence in Epilepsy and Neurological Disorders (AI Epilepsy 2025).
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
