Video
Seria Medicamente de salvare pentru DEE - Partea 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…
Citeşte mai multDisfuncție autonomă/Disautonomie
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…
Citeşte mai multSalvăm telesănătatea noastră pentru familiile 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,…
Citeşte mai multSeria Medicamente de salvare pentru DEE - Partea 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…
Citeşte mai multRescue 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…
Citeşte mai multCOVID-19 Vaccines and Epilepsy – Focus on DEE Population
In conjunction with NIH and our partners at the PCDH19 Alliance, we held this webinar to update DEE families on COVID-19 vaccines and epilepsy. This included updates on the development…
Citeşte mai multSeria de medicamente de salvare pentru DEE - Partea 1
This webinar was originally broadcast live on June 12, 2020. We heard from a caregiver about her experience navigating and using rescue medications for DEEs and from two leading professionals…
Citeşte mai multPromovarea relațiilor sănătoase între cei cu epilepsie severă și frații lor
Have you struggled with how to manage the relationships between your medically complex children and their more typically developing siblings? Are you a sibling to someone with severe epilepsy and…
Citeşte mai multÎmbunătățirea calității îngrijirii în epilepsia rară a copilăriei
This quality of care webinar was moderated by Gabrielle Conecker, mother to Elliott who has SCN8A-related epilepsy and severe DEE, and is Co-Founder of Wishes for Elliott and DEE-P Connections.…
Citeşte mai multStrategii pentru a învăța acasă cu copilul DEE și pentru a implica întreaga familie
This is a recording of the DEE-P Connections webinar from May 13, 2020 “Strategies for Fun and Learning at Home for Kids with DEEs and the Whole Family” which explored…
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