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Dr. Natalia Juliá, a member of the Neurometabolic team at the Sant Joan de Deu Hospital in Barcelona, Spain will speak at the European Paediatric Neurology Society (EPNS) Congress in Prague. She will do a podium presentation of the results of the L-Serine Clinical Trial: “Tolerability and efficacy of L-Serine in patients with GRIN-related encephalopathy”, on June…

Empowering Voices: A Community-Directed Panel Discussion on Epilepsy in Autism Jun 2, 2023 02:30 PMT (22:30 GM) – FREE Online Event As an organization committed to serving individuals with autism, we at The Brain Foundation understand the unique challenges and uncertainties that come with a diagnosis of epilepsy. This online panel discussion aims to bridge…

It is our pleasure to announce that this year we will start with a newsletter dedicated to patients’ associations. It is our wish to connect and engage more with the wide community of rare and complex epilepsies and provide better support by disseminating relevant information. If you wish to disseminate the information about your association, projects, activities and events you are planning, please…

EpiCARE is the ERN (European Reference Network) for all rare and complex epilepsy. The aim is to increase knowledge among doctors, researchers and also among parents and patients and to facilitate discussion about complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources. A large number of (rare) conditions…

Please find below the recordings of the presentations of the Nordic Rare Disease Summit 2023 which was hosted on April 17, 2023.  At the Nordic Rare Disease Summit, representatives of Sweden, Denmark, Finland and Norway were in attendance. The Summit is essential in the joint work to address and improve the challenges people with rare…