活動
防止護理人員倦怠：增強復原力研討會
Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
DEE-P 社群聊天
加入我們，有機會與 STXBP1 媽媽和社工 Amelia Seraphia Derr 以及她的媽媽、心理學家 Susan Bourgerie 聯繫，她上週主持了我們的會議…
Cortical Visual Impairment and the DEEs
Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what it means for your child, how to get the right kind of therapy and adapt your home/life. Our guests will be rare epilepsy/DEE mom Stephanie…
DEE-P Discussion: CVI and the DEEs
Join us for a conversation with caregivers about cortical visual impairment - diagnosis, therapies, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children living with CVI: Anne Thompson Heller Stephanie Kung Madeleine Oudin Rachel Gaddis
DEE-P 社群聊天
加入我們，有機會與其他家長/照顧者聯繫，並討論我們撫養患有 DEE/罕見癲癇症的兒童的經驗。
DEE-P 社群聊天
加入我們，有機會與其他家長/照顧者聯繫，並討論我們撫養患有 DEE/罕見癲癇症的兒童的經驗。
給子孫後代的禮物－大腦捐贈：考慮因素及其運作方式
在與罕見癲癇媽媽的重要討論中，她們決定在孩子過世後捐獻其腦組織，我們將討論有關此問題的一些關鍵要素…
Inchstone 計畫社群更新 – 2024 年春季
請加入 Inchstone 專案研究團隊，了解我們努力創建一系列評估工具的最新進展，這些工具可以準確地衡量我們的進展…
增加 DEE 中臨床試驗和新療法的可及性
加入我們，討論一種有前途的新癲癇治療臨床試驗模型，該模型可加速更廣泛的 DEE 社群的普及。採用「籃式試驗」設計…
Traveling with your medically complex child
In this extended discussion, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children - both…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
How to Get Grants and Funding for Medical Expenses
DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding…
