همه نوشتههای Gabi Conecker
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…
ادامه مطلبCOVID-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…
ادامه مطلبRescue Medications for DEEs Series – Part 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…
ادامه مطلبPromoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings
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…
ادامه مطلببهبود کیفیت مراقبت در صرع نادر دوران کودکی
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.…
ادامه مطلباستراتژی هایی برای یادگیری در خانه با فرزند DEE و درگیر کردن کل خانواده
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…
ادامه مطلبNavigating Safety for Pediatric Epilepsy Patients in COVID-19 Environment
This webinar—planned in coordination with The Epilepsy Foundation of America—shared front-line experiences and updates on COVID-19 in severe pediatric epilepsy patients from three Boston Children’s Hospital Division of Epilepsy &…
ادامه مطلبCOVID-19 از طریق دریچه غم و اندوه
DEE-P Connections planned this webinar in coordination with The Wendt Center for Loss and Healing. This is a recording of the webinar originally broadcasted on April 14, 2020. The webinar…
ادامه مطلبژنتیک DEE ها
This webinar was planned in coordination with Invitae and Children’s Hospital Colorado. The webinar was originally held on April 29, 2020. This webinar on the genetics of DEEs includes information…
ادامه مطلبمحافظت از کودکان مبتلا به صرع که از نظر پزشکی پیچیده و/یا دارای سیستم ایمنی سرکوب شده در برابر COVID-19 هستند
This session was moderated by Heidi Grabenstatter – Science Director for IFCR and the panelists for this webinar were: Dr. Anastassios Koumbourlis – Division Chief, Pulmonary & Sleep Medicine &…
ادامه مطلب