Webinar Archives

Cuidados poco comunes y desafíos con el cuidado personal: una discusión del DEE-P

This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…

Programas para ayudar a cuidar a nuestros niños complejos: pacientes hospitalizados y ambulatorios

This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…

Protección del acceso poco común a tratamientos no aprobados

Este seminario web se grabó el 22 de mayo de 2023. ¿Se han negado las compañías de seguros o Medicaid a cubrir tratamientos recetados críticos alegando que no estaban indicados en la etiqueta y que no eran “médicamente necesarios”? ¿Se niega la cobertura...?

Aprenda cómo maximizar sus datos con el CRID

This webinar was recorded on April 28th, 2023. Watch to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children)…

Problemas gastrointestinales y trastornos del desarrollo neurológico

This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…

Cirugía de epilepsia y epilepsias genéticas raras

Are you curious about when and why you should consider epilepsy surgery for your child with a rare genetic epilepsy or DEE? Our guests are: Dr. Ahmad Marashly, Medical Director,…

Dieta cetogénica y las DEE

DEE-P co-hosted this in partnership with the KCNT1 Epilepsy Foundation on October 17, 2022. Find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and…

Salud e higiene bucal para quienes no comen por la boca

DEE-P co-hosted this in partnership with the KCNT1 Epilepsy Foundation on September 16, 2022. Our guests were: Shannon Daly Weir, a KCNT1 mom and dental hygienist, is working toward her…

Regreso a la escuela SAP

Aug 24th at 1pm ET 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…

¿Qué estamos aprendiendo sobre las vacunas COVID-19 y las infecciones en personas con epilepsias raras?

This is a recording of the webinar, “What are we learning about COVID-19 vaccines and infections in those with rare epilepsies?”, which was held on July 21st, 2022. Are you…