وبینار
مرگ غیرمنتظره ناگهانی در صرع (SUDEP) قسمت 2: چه کاری می توانیم انجام دهیم؟
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…
ادامه مطلبمحرک های اعصاب - آیا یک VNS، DBS یا RNS می تواند کمک کند؟
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…
ادامه مطلبThe ABCs of Clinical Trials Part 2 – What Every Rare Disease Family Should Know
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…
ادامه مطلبThe ABC’s of Clinical Trials Part 1 – The Basics
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…
ادامه مطلبمرگ غیرمنتظره ناگهانی در صرع (SUDEP) قسمت 1: چه می دانیم؟
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…
ادامه مطلبدرمان صرع قسمت 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…
ادامه مطلبCuring 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…
ادامه مطلبRescue 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…
ادامه مطلبAutonomic 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…
ادامه مطلبصرفه جویی در سلامت از راه دور برای خانواده های DEE
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,…
ادامه مطلب