活動
Webinar: Why Brain Tissue Donation Matters
The loss of any loved one with a rare epilepsy is unimaginable. We all wish there were more we could do to help end the suffering that comes with a…
Summer Seizure Action Planning – What you need to know and do to be prepared
"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？
Are you curious about the safety of COVID-19 vaccines for those under 5 with rare epilepsies? Are you unsure about whether to get your child with a rare epilepsy vaccinated…
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…
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…
