 If you want to be informed about our next events, educational and research activities, calls, but also receive news from the coordination team, our clinicians, researchers, nurses and our Patient Advocate community…don’t miss this Newsletter! Feel free to forward this newsletter… and here is the link to sign upand receive it regulary! |
Next Webinar – 13th February Register here We are honoured to host again, one year later, two esteemed colleagues, Professors Andriy Dubenko and Volodymyr Kharytonov, who are also members of the Ukrainian chapter of the International League Against Epilepsy, to share their experiences during these challenging years of war. We deeply admire their unwavering dedication to epilepsy care and their efforts to maintain access to treatment despite the ongoing difficulties. Our webinars take place once a month, and the recordings are always available on our website. You can check the program of the upcoming webinars and register to the mailing on the webpage. |
| Latest news International Epilepsy Day – February 10th 2025 International Epilepsy Day, organized annually by the International Bureau for Epilepsy (IBE) and the ILAE, will take place on February 10. If you’re planning an event, promote it with the International Epilepsy Day logo and raise awareness by posting on social media with the hashtag #EpilepsyDay, tagging IBE, ILAE and EpiCARE for wider visibility and support.  Official Launch of the RealiseD Project On January 9-10, 2025, the launch of the RealiseD IHI Project marked a significant milestone for clinical trials in rare and ultra-rare diseases. EpiCARE, involved in key areas of the project (WP2, WP3 and WP11), traveled to Vienna (Austria) to attend the RealiseD kick-off meeting at Sigmund Freud University. Over 300 million people worldwide, including 30 million in Europe, live with a rare disease. Most of these are ultra-rare and have no treatment options. The RealiseD IHI project is here to change that. This European public-private partnership formed by nearly 40 partners, is on a mission to optimise and accelerate the development of treatments for rare and ultra-rare conditions.  “Beyond Seizures: Advancing Holistic Care for Rare and Complex Epilepsies” Workshop (26-27th May 2025 – Alesund, Norway) This workshop focuses on the challenges beyond seizure control, including neurodevelopmental, cognitive, mental health, and quality-of-life impacts. Organized by the “Beyond Seizures” EpiCARE Working Group, it promotes an interdisciplinary approach to understanding and addressing these complex issues in patients with Developmental and Epileptic Encephalopathies (DEEs) and Drug-Resistant Epilepsies (DRE), highlighting the profound effects on patients, families, and caregivers. The session schedule is now available for consultation. You can register through this link!  Calls for collaborative Genetic Research New Calls for collaborative genetic research on rare and complex epilepsies are available on the EpiCARE website. Visit it for more information on each one: Alexandru-Ștefan Niculae, Diana Gabriela Bârcă, Professor Dana Craiu Genotype – phenotype correlation and phenotypic characterization of patients with KCNQ1 variants Allan Bayat – Danish Epilepsy Centre, Filadelfia Understanding KCNH1 – related disorders: translating genetic diagnostics into personalized treatment Understanding PIG´opathies, GPI-anchoring disorders of glycosylation GRIA Genes Robert Lauerer-Braun, Holger Lerche, Elena Kuster – University Hospital Tübingen, Germany DECADE – Deciphering the CACNA1E developmental and epilepticencephalopathy Reza Maroofian, Amy McTague, Henry Houlden – Department of Neuromuscular Diseases UCL Queen Square Institute of Neurology and UCL GOS Institute of Child Health Characterization of the Clinical and Natural History of UFSP2-Related Developmental and Epileptic-Dyskinetic Encephalopathy Upcoming events The international Symposium on Neurodevelopmental Syndromes and Movement Disorders, endorsed by the ERN EpiCARE and the ERN-RND “Join us in Barcelona, or remotely, for the International Symposium on Neurodevelopmental Syndromes and Movement Disorders from February 6-7, 2025, Explore the latest insights into neurodevelopmental and movement disorders, including their neurobiological basis, behavioural impacts, and comorbidities across the lifespan. This event brings together leading experts to foster collaboration and advancements in the field! Tempted by our program? Hurry up! Join us and register here“. Save the date: 16th European Epilepsy Congress, Athens (Greece) The 16th European Epilepsy Congress will take place in Athens, Greece from September 5th – 9th 2026. Call for session proposals submissions are open by 7 February 7th 2025! |