Video
DEE 救援藥物系列 – 第 4 部分
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…
閱讀更多自主神經功能障礙/自主神經功能障礙
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…
閱讀更多為 DEE 家庭拯救我們的遠距醫療
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,…
閱讀更多DEE 救援藥物系列 – 第 3 部分
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…
閱讀更多DEE 救援藥物系列 – 第 2 部分
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…
閱讀更多COVID-19 疫苗和癲癇 – 關注 DEE 人群
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…
閱讀更多DEE 救援藥物系列 – 第 1 部分
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…
閱讀更多促進嚴重癲癇患者與其兄弟姊妹之間的健康關係
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…
閱讀更多提高罕見兒童癲癇的護理品質
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.…
閱讀更多與 DEE 孩子在家學習和全家人參與的策略
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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