In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack…

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…

"Summer Seizure Action Planning - What you need to know and do to be prepared" with pediatric neurologist, Dr. Inna Hughes With Summer comes changes in routine, new caregivers, and…

"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…

Are you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies? Are you unsure about whether to get your child with a rare epilepsy vaccinated…

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…

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…

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…

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…

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…