Posts by 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…
Leer másVacunas COVID-19 y epilepsia: enfoque en la población DEE
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…
Leer másRescue 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…
Leer másPromoting 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…
Leer másMejora de la calidad de la atención en la epilepsia infantil poco común
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.…
Leer másEstrategias para aprender en casa con su hijo DEE e involucrar a toda la familia
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…
Leer másNavegando por la seguridad para pacientes pediátricos con epilepsia en el entorno de COVID-19
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 &…
Leer másCOVID -19 a través de la lente del duelo
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…
Leer másGenética de las DEE
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…
Leer másProtección de niños con epilepsia médicamente complejos y/o inmunosuprimidos contra el COVID-19
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 &…
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