活動
網路研討會：針對具有複雜溝通需求的兒童的高科技解決方案
This webinar, put on in conjunction with the CACNA1A Foundation, is the fifth in our series on Optimizing Therapies for those with DEEs, and will focus on the use of high-tech AAC solutions for communication and access to the home environment. We will look at options available for being able to access different toys, home environmental…
Growth Attenuation Therapy – Everything you want and need to know
Join us to learn more about growth attenuation therapy (GAT) - an intervention to bring on early puberty in order to reduce the ultimate growth of a child. Since 2006, this treatment has been utilized to help caregivers continue to care for non-ambulatory children with severe physical and cognitive delays in their own homes. Those…
CURE Epilepsy Webinar – Speaking About SUDEP: Arming the Rare Epilepsy Community with the Latest Research
In partnership with DEE-P Connections and Partners Against Mortality in Epilepsy (PAME) Sudden Unexpected Death in Epilepsy (SUDEP) affects approximately 1 in 1,000 people with epilepsy, regardless of age 1,2. While lack…
網路研討會：為什麼腦組織捐贈很重要
失去任何患有罕見癲癇症的親人都是難以想像的。我們都希望我們能做更多的事情來幫助結束隨之而來的痛苦…
夏季癲癇發作行動計畫—您需要了解什麼並做好準備
"Summer Seizure Action Planning - What you need to know and do to be prepared" with pediatric neurologist, Dr. Inna Hughes With Summer comes changes in routine, new caregivers, and…
SAP de verano 規劃：需要做好準備
"Planificación SAP de verano: lo que necesita saber y hacer para estar preparado" con Dr. Rebecca Garcia-Sosa En Español! Con el verano llegan cambios en la rutina, nuevos cuidadores y…
關於罕見癲癇患者的 COVID-19 疫苗和感染，我們了解到了什麼？
您是否對 5 歲以下罕見癲癇患者接種 COVID-19 疫苗的安全性感到好奇？您是否不確定是否要讓患有罕見癲癇症的孩子接種疫苗…
回到學校 SAP
Back to school time means it's time to update your child's seizure action plan (SAP)! Make sure that those who care for your child know how to handle seizure emergencies…
不經口進食者的口腔健康與衛生
Does your loved one with a DEE/rare epilepsy struggle with dental issues? Swollen gumsExcessive oral secretionsTooth grinding Join us to hear from Dental Hygienist who specializes in working with medically…
Keto 和 DEE
Do you have questions about the keto diet? Come to find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and Pediatric Epileptologist Dr. Chalongchai…
癲癇手術與罕見遺傳性疾病
Come hear about when and why you should consider epilepsy surgery for your child with a DEE. Our guests will be: Dr. Ahmad Marashly, Medical Director, Pediatric Epilepsy Surgery Program,…
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…
