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  • Webinar: Why Brain Tissue Donation Matters

    The loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a…

  • Planificación SAP de verano: þú þarft að hafa sabre y hacer fyrir estar undirbúning

    "Planificación SAP de verano: lo que necesita saber y hacer para estar preparado" con Dr. Rebecca Garcia-Sosa En Español! Con el verano llegan cambios en la rutina, nuevos cuidadores y nuevos entornos. Prepárese para emergencias convulsivas en todos los escenarios planificando con anticipación. ¡Venga a escuchar de un neurólogo pediátrico y una familia de epilepsia…

  • Aftur í skólann SAP

    Back to school time means it's time to update your child's seizure action plan (SAP)! Make sure that those who care for your child know how to handle seizure emergencies appropriately and in accordance with your wishes. If it isn't in the plan, it can't be done. Hear from Dr. Inna Hughes and SCN2A dad,…

  • Munnheilsa og hreinlæti fyrir þá sem borða ekki um munn

    Does your loved one with a DEE/rare epilepsy struggle with dental issues? Swollen gumsExcessive oral secretionsTooth grinding Join us to hear from Dental Hygienist who specializes in working with medically complex children, researcher and KCNT1 rare epilepsy mom, Shannon Daly Weir as well as Pediatric Dentist Dr. Hans Reinemer from the University of Utah. This…

  • Keto og DEEs

    Do you have questions about the keto diet? Come to find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and Pediatric Epileptologist Dr. Chalongchai…

  • Flogaveikiaðgerðir og sjaldgæfar erfðasjúkdómar

    Komdu og heyrðu um hvenær og hvers vegna þú ættir að íhuga flogaveikiaðgerð fyrir barnið þitt með DEE. Gestir okkar verða: Dr. Ahmad Marashly, læknir, flogaveikiskurðlæknir barna,...

  • Börn GI vandamál í DEEs

    Come hear about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher, a…

  • Inchstone Community Update Webinar

    The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements, which could jeopardize…

  • Flogaveiki Action Network Advocacy Update

    Last Fall 2022, a new consortium - Epilepsies Action Network (EAN) - launched to develop national government relations strategies to increase federal funding for research, translation, care, and cures for…