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今天

  • 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。

  • 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。 「籃子試驗」設計用於旨在治療 DEE 患者症狀（包括癲癇發作）的藥物臨床試驗。這種廣泛的方法與當前標準不同...

  • 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 nationally and internationally. Hear all about packing, planning, meds, supplies, special equipment and more. Ask your questions of these seasoned mom travelers and learn their…

  • 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 sources.

  • ALL ABOUT The Connected Parent

    Join us and the founder of The Connected Parent, Julie Walters. The Connected Parent is like Yelp, but for families that have kids with disabilities!

  • Surviving the Holidays – A DEE-P Chat

    Join us as we chat about navigating the holidays with our medically complex kids. From finding the perfect gifts, making memories, or spending time in the hospital we plan to…

  • DEE-P Fundraising Workshop

    Want support to start your GivingTuesday campaign? Join us for one of our 30 minute GivingTuesday Workshops. We’ll guide you through the setup process, provide campaign tips, and answer any…