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
Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on…
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…
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…
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
In this important discussion with rare epilepsy moms who made the decision to donate theirs children's brain tissue upon death, we will discuss a number of critical elements about this…
Inchstone 計畫社群更新 – 2024 年春季
Please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our…
增加 DEE 中臨床試驗和新療法的可及性
Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used…
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…
