研究
Understanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
閱讀更多增加 DEE 中臨床試驗和新療法的可及性
這是 2024 年 4 月 29 日舉行的網路研討會的錄音。
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。
閱讀更多未確診
本次 DEE-P 討論錄製於 2023 年 9 月 13 日。我們討論不同的…
閱讀更多記錄－針對嚴重受影響人口的預先結果措施
Building a Consortium to Advance Outcome Measures for Severely Affected Populations This is a recording of the second workshop, held November 11th 2021, focused on Building a Consortium to Advance…
閱讀更多記錄－評估現況和機會
ASSESSING STATUS AND OPPORTUNITIES FOR DEVELOPING OUTCOME MEASURES FOR THE MOST SEVERELY AFFECTED POPULATIONS This is a recording of day one of the workshop, held November 4th 2021, and was…
閱讀更多您可以做些什麼來幫助治癒癲癇？
This is a recording of webinar which was held on October 20, 2021. This special session brought together the leaders from government, clinician-researchers, and advocates who devoted two years to…
閱讀更多您的癲癇護理效果如何？
We all want our kids to get the best care possible. But how effective has your child’s epilepsy care been? What can we do to improve outcomes? This conversation—with three…
閱讀更多臨床試驗的基本知識第 2 部分 – 每個罕見疾病家庭都應該了解什麼
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – What Every Rare Family Should Know,” which was held on October 21st, 2020. Our Caregiver…
閱讀更多臨床試驗的 ABC 第 1 部分 – 基礎知識
This is a recording of the webinar “The ABC’s of Clinical Trials: Part 2 – Get Your Community Prepared,” which was held on September 14th, 2020. This webinar included a…
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