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
It will take place in Ljubljana (Slovenia).
The EPNS has been organising Research Meetings since 2008. With an aim to enhance research in Paediatric Neurology, the meeting brings together leaders in the field, active researchers and young fellows who are interested to join or to set up research projects.
Here you have more information about the program.
The second conference titled DIFFERENT FACES OF RARE AND COMPLEX EPILEPSIES will be held in Split, Croatia, from Thursday 17th to Saturday 19th of October 2024.
This conference aims to encourage knowledge sharing and productive discussions on rare and complex epilepsies. It is focused on the latest research and advances in long-term treatment methods. Its goal is to contribute to greater visibility of these diseases, and to help patients and their families to come out of the shadows.
Here you have more information about the conference.
GRIN Europe id very excited to invite you to our first 3 day European GRIN conference. Join it on November 8, 9 and 10 in Barcelona to learn more about GRIN disorders and their complex symptoms and to meet with researchers, clinicians and other GRIN parents.
The “2nd Advanced Course on the Pharmacological Treatment of Drug Resistant Epilepsies: From Rare to Common Epilepsies” will take place in Palma de Mallorca from November 8 to 10, 2024. The objective of the course is to offer an update on current and future pharmacological treatments and strategies for drug-resistant epilepsies. The target audience is physicians and basic scientists willing to increase their knowledge on how to improve the treatment of these most challenging epilepsies. The audience will be encouraged to actively participate through case discussions.
The 12th Symposium on ATP1A3 in Disease is a scientific meeting that originated from the discovery of ATP1A3 mutations in Alternating Hemiplegia of Childhood (AHC). The first symposium, held in Brussels in 2012, marked a significant milestone for the AHC and ATP1A3 community by bringing together researchers, clinicians, patients, and advocates to collectively advance the understanding of ATP1A3-related disorders. Since then, it has become a hub for collaboration, drawing diverse global expertise. On November 14-15, 2024, the symposium will be held for the first time in Spain, at the historic Espai Modernista Sant Pau in BarcelonA.
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 !
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 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).
