Mesajên bi tagê '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…
Read MoreReal 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…
Read MoreDEE-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…
Read MoreDEE 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…
Read MoreWhy 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…
Read MoreTÊKIRIN - Tedbîrên Encama Pêşveçûn Ji bo Nifûsên Zehf Bibandor
Avakirina Konsorsiyûmek Ji bo Pêşxistina Tedbîrên Encamê Ji bo Nifûsên Zehmetbar Ev tomarkirina atolyeya duyemîn e, ku di 11-ê Mijdara 2021-an de pêk hat, li ser Avakirina Konsorsiyûmek ji bo Pêşveçûnê…
Read MoreQEYDKIRINA - NIRXANDINA REWŞ Û DERBETAN
NIRXANDINA REWŞ Û DERBET JI BO PÊŞVE DIKE TÎDÎNÊN ENCAME JI BO NIFELÊN HERÎ ZIRDAR KIRIN Ev qeyda roja yekem a komxebatê ye, ku di 4-ê Mijdara 2021-an de hate lidarxistin, û…
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