Innlegg av Gabi Conecker
Redningsmedisiner for DEEs-serien – del 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…
Les merCOVID-19-vaksiner og epilepsi – Fokus på DEE-populasjon
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…
Les merRedningsmedisiner for DEEs-serien – del 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…
Les merFremme sunne forhold mellom de med alvorlig epilepsi og deres søsken
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…
Les merForbedring av omsorgskvaliteten ved sjelden barneepilepsi
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.…
Les merStrategier for å lære hjemme med DEE-barnet ditt og engasjere hele familien
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…
Les merNavigasjonssikkerhet for pediatriske epilepsipasienter i COVID-19-miljø
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 &…
Les merCOVID-19 gjennom sorgens linse
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…
Les merGenetikk av DEEs
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…
Les merBeskyttelse av medisinsk komplekse og/eller immunsupprimerte barn med epilepsi mot 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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