Webinars & Other Content
- Blended Diets 101: Benefits, Basics & Getting Started
- DEEP Submits Formal Comments Opposing OMB Proposal That Threatens Progress in Rare Epilepsy Research
- FDA Guidance To Accelerate Individualized Therapies for Ultra-rare Diseases
- Understanding ASOs & Informed Consent
- Seizure Clusters Vs. Status: What Every Caregiver Needs To Know
- Dignity in Design: Why Universal Changing Stations Cannot Wait
- Navigating Respiratory Care for Medically Complex Children
- Understanding Quality of Life in Developmental and Epileptic Encephalopathy
- Caring Together: Families, Providers, and the Role of Palliative Support
- Navigating GI Interventions: From Testing to Treatment
- Lightening the Load: How AI Can Support Families Managing Complex Care
- Parent Perspectives Insights Into Medical Decision-making
- Stronger Together: Reflections from the FamilieSCN2A Conference
- Strong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies
- A Devastating New Roadblock to Rare Epilepsy Care and Cures
- What’s At Stake for Medicaid and How To Take Action
- Real Moms, Real Stories: Advocacy That Inspires
- Relationships 101: Marriage & Parenting a Medically Complex Child
- The Life-Saving Nature of Epilepsy Surgery
- Growing Together: Navigating the Life Stage Checklist for Families
- DEE Caregivers Share Urgent Needs for Accelerated Treatment and Improved Measurement for DEEs
- Why do I love DEE-P Connections?
- ALL ABOUT The Connected Parent
- Our CVI Journey
- How to Get Grants and Funding for Medical Expenses
- Sleep & DEEs
- Are we giving sleep enough attention?
- Traveling with Your Medically Complex Child
- 增加 DEE 中臨床試驗和新療法的可及性
- 管理複雜孩子的旅程
- 大腦捐贈:需要考慮什麼、如何運作、如何提供幫助
- Cortical Visual Impairment (CVI) and the Developmental and Epileptic Encephalopathies (DEEs)
- 防止護理人員倦怠:增強復原力研討會
- 為什麼腦電圖很重要以及它們可以揭示什麼
- 未確診
- IEP 速成課程
- DEE 的骨骼健康
- 罕見的護理和自我護理的挑戰 – DEE-P 討論
- 幫忙照顧複雜孩子的計畫-住院和門診
- 保護罕見的標籤外治療
- 了解如何使用 CRID 最大化您的數據
- 胃腸道問題和神經發育障礙
- 癲癇手術與罕見遺傳性癲癇
- 生酮飲食和 DEE
- 不經口進食者的口腔健康與衛生
- 回到學校 SAP
- 關於罕見癲癇患者的 COVID-19 疫苗和感染,我們了解到了什麼?
- SAP de verano 規劃:需要做好準備
- 夏季癲癇發作行動計畫—您需要了解什麼並做好準備
- 為什麼腦組織捐贈很重要
- 生長抑制療法—您想要和需要知道的一切
- 家庭內替代通訊和存取的高科技選項
- 適用於具有複雜溝通需求的兒童的低技術/無技術通訊系統
- 揭開共濟失調、肌張力過高、手足徐動症和混合音的奧秘
- 針對嚴重發育遲緩兒童的適應性設備和治療策略
- 肌張力減退及其如何影響整體功能和發育的概述
- 兒科臨終關懷支持與護理
- 記錄-針對嚴重受影響人口的預先結果措施
- 記錄-評估現況和機會
- 您可以做些什麼來幫助治癒癲癇?
- 癲癇發作技術-預測和偵測癲癇發作的新興技術
- 扣押技術 – 追踪
- 扣押技術 – 監控
- 您的癲癇護理效果如何?
- 罕見癲癇症候群:ESES、CSWS、EECSWS?
- 做好準備 – 引導您完成為您的 DEE 孩子規劃安全未來的旅程
- Seizure Action Plan Awareness
- 癲癇意外猝死 (SUDEP) 第 3 部分 – 家庭觀點
- 癲癇意外猝死 (SUDEP) 第 2 部分:我們能做什麼?
- 神經刺激器 - VNS、DBS 或 RNS 有幫助嗎?
- 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
- 臨床試驗的 ABC 第 1 部分 – 基礎知識
- 癲癇意外猝死 (SUDEP) 第 1 部分:我們知道什麼?
- 治愈癲癇第 2 部分
- Curing the Epilepsies Part 1
- Rescue Medications for DEEs Series – Part 4
- 自主神經功能障礙/自主神經功能障礙
- 為 DEE 家庭拯救我們的遠距醫療
- Rescue Medications for DEEs Series – Part 3
- Rescue Medications for DEEs Series – Part 2
- COVID-19 疫苗和癲癇 – 關注 DEE 人群
- Rescue Medications for DEEs Series – Part 1
- Promoting Healthy Relationships between Those with Severe Epilepsy and Their Siblings
- 提高罕見兒童癲癇的護理品質
- Strategies for Learning at Home with your DEE Child and Engaging the Whole Family
- COVID-19 環境下小兒癲癇患者的安全保障
- COVID -19 Through the Lens of Grief
- DEE 的遺傳學
- 保護病情複雜和/或免疫抑制的癲癇兒童免受 COVID-19 的侵害
- 針對患有嚴重 DEE 的兒童的 IEP
- DEE 和 DEE-P 概述
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