生长抑制疗法——您想要和需要知道的一切
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,…
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…
网络研讨会:脑组织捐赠为何如此重要
失去任何患有罕见癫痫的亲人都是难以想象的。我们都希望我们能做更多的事情来帮助结束癫痫带来的痛苦……
夏季癫痫发作行动计划——你需要知道什么以及需要做些什么来做好准备
"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…
冬季 SAP 计划:您需要了解并做好准备
"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…
我们对罕见癫痫患者中 COVID-19 疫苗和感染的情况有何了解?
您是否想知道 COVID-19 疫苗对 5 岁以下患有罕见癫痫症的儿童的安全性?您是否不确定是否要让患有罕见癫痫症的孩子接种疫苗……
回到学校 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…
不进食者的口腔健康和卫生
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…
生酮饮食和 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…
癫痫手术和罕见遗传疾病
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 中的儿科胃肠道问题
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 社区更新网络研讨会
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…