醫療的
大腦捐贈：需要考慮什麼、如何運作、如何提供幫助
在與罕見癲癇媽媽的重要討論中，她們決定在孩子去世後捐獻其腦組織，我們深入討論了有關此問題的一些關鍵要素…
閱讀更多為什麼腦電圖很重要以及它們可以揭示什麼
這是 2023 年 10 月 12 日錄製的 DEE-P 網路研討會的錄音。
閱讀更多DEE 的骨骼健康
這是 2023 年 8 月 5 日錄製的 DEE-P 網路研討會的錄音。
閱讀更多保護罕見的標籤外治療
This webinar was recorded on May 22nd, 2023. Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not “medically necessary”? Is coverage denied…
閱讀更多了解如何使用 CRID 最大化您的數據
This webinar was recorded on April 28th, 2023. Watch to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children)…
閱讀更多胃腸道問題和神經發育障礙
This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…
閱讀更多癲癇手術與罕見遺傳性癲癇
Are you curious about when and why you should consider epilepsy surgery for your child with a rare genetic epilepsy or DEE? Our guests are: Dr. Ahmad Marashly, Medical Director,…
閱讀更多生酮飲食和 DEE
DEE-P co-hosted this in partnership with the KCNT1 Epilepsy Foundation on October 17, 2022. Find out how the ketogenic diet works with the DEEs from Ketogenic Diet Program Director and…
閱讀更多不經口進食者的口腔健康與衛生
DEE-P co-hosted this in partnership with the KCNT1 Epilepsy Foundation on September 16, 2022. Our guests were: Shannon Daly Weir, a KCNT1 mom and dental hygienist, is working toward her…
閱讀更多回到學校 SAP
Aug 24th at 1pm ET 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…
閱讀更多