Video
Síndrome de epilepsia poco común: ¿ESES, CSWS, EECSWS?
This webinar was broadcast live on June 10, 2021. Rare within rare – ESES Electrical status epilepticus during slow-wave sleep (ESES), also known as continuous spike-wave of slow sleep (CSWS)…
Leer másEsté preparado: lo guiaremos a través del viaje de planificación para un futuro seguro para su hijo DEE
This introductory webinar shares an overview of the planning necessary for special needs parents to ensure that their children are as comfortable and secure as they (and you!) age. Please…
Leer másSeizure Action Plan Awareness
Anyone with seizures should have one… The week of February 8-14, 2021 is the first Seizure Action Plan Awareness Week (SAPAW) to be held annually (starting on the second Monday…
Leer másMuerte Súbita Inesperada en Epilepsia (SUDEP) Parte 2: ¿Qué podemos hacer?
There are a number of efforts underway to improve communication about and prevention of SUDEP. This webinar explores how some advocates are working to improve communication with families about SUDEP…
Leer másEstimuladores nerviosos: ¿podrían ayudar un VNS, DBS o RNS?
Have you wondered whether vagus nerve stimulators (VNS) might help reduce the intensity of your child’s seizures? What about a responsive neurostimulator (RNS)? Deep brain stimulator (DBS)? This webinar shares…
Leer másEl ABC de los ensayos clínicos, parte 2: lo que toda familia de enfermedades raras debe saber
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – What Every Rare Family Should Know,” which was held on October 21st, 2020. Our Caregiver…
Leer másEl ABC de los ensayos clínicos, parte 1: conceptos básicos
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – Get Your Community Prepared,” which was held on September 14th, 2020. This webinar included a…
Leer másMuerte súbita inesperada en epilepsia (SUDEP) Parte 1: ¿Qué sabemos?
What do we know about SUDEP? What don’t we know? What is the state of the research? This webinar helps answer those questions, and more, with three experts: Sally Schaeffer…
Leer másCuring the Epilepsies Part 2
This is a recording of the second webinar in this series—developed in conjunction with the the Epilepsy Leadership Council and the Rare Epilepsy Network—on Curing the Epilepsies, which was held…
Leer másCuring the Epilepsies Part 1
This is a recording of the webinar “Curing the Epilepsies: Part 1,” which was held on September 14th, 2020. This is a recording of the first webinar in this series—developed…
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