video Archives

Vacunas COVID-19 y epilepsia: enfoque en la población DEE

In conjunction with NIH and our partners at the PCDH19 Alliance, we held this webinar to update DEE families on COVID-19 vaccines and epilepsy. This included updates on the development…

Serie Medicamentos de rescate para DEE - Parte 1

This webinar was originally broadcast live on June 12, 2020. We heard from a caregiver about her experience navigating and using rescue medications for DEEs and from two leading professionals…

Mejora de la calidad de la atención en la epilepsia infantil poco común

This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.…

Estrategias para aprender en casa con su hijo DEE e involucrar a toda la familia

This is a recording of the DEE-P Connections webinar from May 13, 2020 “Strategies for Fun and Learning at Home for Kids with DEEs and the Whole Family” which explored…

Navegando por la seguridad para pacientes pediátricos con epilepsia en el entorno de COVID-19

This webinar—planned in coordination with The Epilepsy Foundation of America—shared front-line experiences and updates on COVID-19 in severe pediatric epilepsy patients from three Boston Children’s Hospital Division of Epilepsy &…

COVID -19 a través de la lente del duelo

DEE-P Connections planned this webinar in coordination with The Wendt Center for Loss and Healing. This is a recording of the webinar originally broadcasted on April 14, 2020. The webinar…

Genética de las DEE

This webinar was planned in coordination with Invitae and Children’s Hospital Colorado. The webinar was originally held on April 29, 2020. This webinar on the genetics of DEEs includes information…

Protección de niños con epilepsia médicamente complejos y/o inmunodeprimidos contra el COVID-19

This session was moderated by Heidi Grabenstatter – Science Director for IFCR and the panelists for this webinar were: Dr. Anastassios Koumbourlis – Division Chief, Pulmonary & Sleep Medicine &…

IEP para niños con DEE graves

This webinar was originally broadcast live on February 26, 2020 @2PM ET. Getting your child’s education team to understand your child and how they best learn can sometimes be challenging.…

Descripción general de DEE y DEE-P

This webinar provides an overview of developmental and epileptic encephalopathies (DEEs) and background on the DEE-Project – our mission, activities and partners. Our guest was Tracy Dixon-Salazar, PhD – Director…