活動
DEE 的兒科胃腸道問題
Come hear about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher, a…
Inchstone 社區更新網路研討會
The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements, which could jeopardize…
癲癇行動網絡倡導更新
Last Fall 2022, a new consortium - Epilepsies Action Network (EAN) - launched to develop national government relations strategies to increase federal funding for research, translation, care, and cures for…
了解如何使用 CRID 最大化您的數據
Join us for this 30 min webinar to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children) involved in…
保護罕見的標籤外治療
Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not "medically necessary"? Is coverage denied because treatments that may work for you or…
幫忙照顧複雜孩子的計畫－住院和門診
Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e. ventilator), tube fed, etc. This is a medical…
稀有的照護：如何尋求和接受幫助
Join us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem…
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。這將是我們每個月的第一個機會…
DEE 的骨骼健康
Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health.…
IEP 速成課程
School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join…
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…
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。
