活動
保護罕見的標籤外治療
保險公司或醫療補助是否拒絕承保關鍵的處方治療，聲稱這些治療超出了適應症並且不是「醫療必需的」？承保是否會因為可能對您或您的孩子有效的治療方法不在藥典（基於證據的標籤外治療方案的彙編）中而被拒絕？今天開出的化療藥物中近一半是標籤外藥物，但…
幫忙照顧複雜孩子的計畫－住院和門診
複雜護理計劃是針對患有複雜慢性疾病的兒童的初級護理，通常需要進行多種診斷並依賴技術（即呼吸機）、管飼等。了解並致力於幫助管理這些疾病。此外，複雜的護理計劃 - 都......
稀有的照護：如何尋求和接受幫助
加入我們，與罕見的護理人員討論自我照顧的挑戰。人們喜歡告訴我們需要照顧自己，但當你照顧一個患有複雜疾病的孩子時，這往往看起來像是一種奢侈。我們將討論我們所經歷的鬥爭和學到的方法…
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。這將是我們每月透過 Zoom 與其他 DEE 護理人員聯繫的第一個機會。註冊後，您將能夠使用相同的連結訪問任何未來的會議。
DEE 的骨骼健康
加入我們，了解更多有關大腦與骨骼連接的資訊。我們仍在研究中，但癲癇和抗癲癇藥物 (ASM) 都會對骨骼健康產生不利影響。服用 ASM 的人類骨質流失率增加，並出現其他可能導致骨折風險增加的問題。那我們能做什麼...
IEP 速成課程
對許多人來說，學校就在眼前。現在是重溫 IEP 世界的好時機 Erin Prosser，罕見病媽媽和認證 IEP 大師教練，將與我們一起提供速成課程，介紹如何準備、要考慮什麼以及在此過程中會發生什麼。我們希望您能加入…
DEE-P Discussion – Life with an Undiagnosed DEE
Come join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience, the challenges, and the benefits of connection and community.
DEE-P Chat
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。
為什麼腦電圖很重要以及它們可以揭示什麼
Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist Ingo Helbig from Children's Hospital of Philadelphia and Leah Schust Myers and Shawn Egan from our partners at FamilieSCN2A Foundation for an EEG 101 and…
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, Susan Bourgerie, a psychologist. Their workshop is based on the belief in our innate capacity to adapt, recover, and even thrive despite the effects of…
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 preventing caregiver burnout and building resilience. During this session, you can share your experiences, ask questions and connect with other parents/caregivers about our lives raising…
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…
