نوشته های تگ شده ‘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…
ادامه مطلبReal 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…
ادامه مطلبDEE-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…
ادامه مطلبDEE 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…
ادامه مطلبWhy 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…
ادامه مطلبثبت - اقدامات پیشبرد نتیجه برای جمعیت های به شدت آسیب دیده
ساخت کنسرسیومی برای پیشبرد اقدامات نتیجه برای جمعیتهای به شدت آسیبدیده این فایل ضبط شده از دومین کارگاه است که در 11 نوامبر 2021 برگزار شد، با تمرکز بر ایجاد کنسرسیومی برای پیشرفت…
ادامه مطلبثبت - ارزیابی وضعیت و فرصت ها
ارزیابی وضعیت و فرصتها برای توسعه معیارهای نتیجه برای جمعیتهایی که شدیداً آسیب دیدهاند این ضبط روز اول کارگاه است که در 4 نوامبر 2021 برگزار شد و…
ادامه مطلب