video Archives

L'ABC des essais cliniques, partie 2 – Ce que chaque famille de maladies rares devrait savoir

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…

L'ABC des essais cliniques, partie 1 – Les bases

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…

Sudden Unexpected Death in Epilepsy (SUDEP) Part 1: What do we know?

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…

Rescue Medications for DEEs Series – Part 4

This webinar was originally broadcast live on August 12, 2020 and featured a review of the first 3 webinars in the Rescue Medications for DEEs series and a panel of…

Autonomic Dysfunction/Dysautonomia

Does your child suffer from digestive and/or urinary motility problems? Do they suffer from temperature regulation issues? Do they have irregular blood pressure and/or heart rate? When you have ruled…

Saving Our Telehealth for DEE Families

This is a recording of the webinar “Saving Our Telehealth,” which was held on July 20th, 2020. For families who have trouble leaving the house with their medically fragile children,…

Rescue Medications for DEEs Series – Part 3

This webinar was originally broadcast live on July 22, 2020 and featured a panel of caregivers sharing their experiences utilizing rescue medications for DEEs. This third webinar of the Rescue…

Rescue Medications for DEEs Series – Part 2

This webinar, which was originally broadcast live on July 8, 2020, gave a synopsis of recent in-depth interviews with DEE caregivers about their experiences utilizing rescue medications for DEEs and…