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  • Webinar: Por que a doação de tecido cerebral é importante

    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 rare epilepsy diagnosis. In this webinar, we want to tell you about one incredibly important way families can make a huge impact - brain tissue…

  • De volta às aulas 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…

  • Saúde e higiene bucal para quem não come pela boca

    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 and the 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 Phitsanuwong and registered dietician Stephanie Schimpf from the University of Chicago!

  • Cirurgia de epilepsia e doenças genéticas raras

    Come hear about when and why you should consider epilepsy surgery for your child with a DEE. Our guests will be: Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program, Johns Hopkins HospitalandMonika Jones, JD Founder and Executive Director of the Pediatric Epilepsy Surgery Alliance In this webinar, you will:- Get an intro to epilepsy…

  • Pediatric GI Issues in the 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 Koolen-de Vries Syndrome Foundation Board member and KdVS mom.

  • 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 trials of new disease-altering treatments. The goal of the Inchstone Project is to identify and develop measures that are sensitive to the small but important…

  • Epilepsies 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 the epilepsies. We welcome ALL epilepsies stakeholders who share our vision and mission. Register here to hear their spring updates!

  • Learn How to Maximize Your Data with The CRID

    Join us for this 30 min webinar to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children) involved in clinical research studies the opportunity to create their own unique universal patient identifier to be used in clinical research. This CRID identifier can be used…