Video Archives

Seltenes Epilepsiesyndrom: 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)…

Be Prepared – Guiding You Through the Journey of Planning for a Secure Future for your DEE Child

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…

Bewusstsein für den Aktionsplan bei Anfällen

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…

Plötzlicher unerwarteter Tod bei Epilepsie (SUDEP), Teil 2: Was können wir tun?

Developmental And Epileptic Encephalopathies

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…

Nervenstimulatoren – könnten ein VNS, DBS oder RNS helfen?

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…

Das ABC klinischer Studien Teil 2 – Was jede Familie mit seltenen Krankheiten wissen sollte

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…

Das ABC der klinischen Studien Teil 1 – Die Grundlagen

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…

Plötzlicher unerwarteter Tod bei Epilepsie (SUDEP), Teil 1: Was wissen wir?

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…

Curing 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…

Curing 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…