Webinar
Plötzlicher unerwarteter Tod bei Epilepsie (SUDEP), Teil 2: Was können wir tun?
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…
Mehr lesenNervenstimulatoren – 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…
Mehr lesenDas 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…
Mehr lesenDas 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…
Mehr lesenPlötzlicher 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…
Mehr lesenCuring 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…
Mehr lesenCuring 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…
Mehr lesenRescue 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…
Mehr lesenAutonome Dysfunktion/Dysautonomie
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…
Mehr lesenSaving 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,…
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