Posts Tagged ‘DEE’
Stronger Together: Reflections from the FamilieSCN2A Conference
Every story within our DEE community carries its own weight, wisdom, and wonder. This past August, our team had the privilege of attending the FamilieSCN2A conference in Denver to not…
閱讀更多Real Moms, Real Stories: Advocacy That Inspires
Join us, for an inspiring and down-to-earth conversation with six incredible moms who are walking the path of advocacy for their disabled children. They’ll share personal stories—real, raw, and powerful—about…
閱讀更多DEE-P Chat: Relationships 101 Follow-up
Join us, for a follow up with your partner for a “DEE-P Chat” with other couples to feel seen and heard. Amanda and Anne will be in attendance to answer…
閱讀更多DEE Caregivers Share Urgent Needs for Accelerated Treatment and Improved Measurement for DEEs
On November 22nd, DEE-P Connections, in partnership with the Rare Epilepsy Network (REN), held a DEE Patient Listening session with members of the Food and Drug Administration (FDA). The session…
閱讀更多Why do I love DEE-P Connections?
Why do I love DEE-P Connections? I had never heard of a Developmental and Epileptic Encephalopathy (DEE) until we were told our daughter had one. She was just three months…
閱讀更多記錄－針對嚴重受影響人口的預先結果措施
建立聯盟以推進針對嚴重受影響人群的成果措施這是 2021 年 11 月 11 日舉行的第二次研討會的錄音，重點是建立聯盟以推進…
閱讀更多記錄－評估現況和機會
評估為受影響最嚴重的人群制定成果措施的現狀和機會這是 2021 年 11 月 4 日舉行的研討會第一天的記錄，是…
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