Færslur merktar '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…
Lestu meiraReal 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…
Lestu meiraDEE-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…
Lestu meiraDEE 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…
Lestu meiraWhy 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…
Lestu meiraSKRÁNING - Fyrirfram árangursráðstafanir fyrir alvarlega sýkta íbúa
Að byggja upp hóp til að efla árangursráðstafanir fyrir íbúa sem verða fyrir alvarlegum áhrifum Þetta er upptaka af annarri vinnustofu, haldinn 11. nóvember 2021, með áherslu á að byggja upp hóp til að efla ...
Lestu meiraUPPTAKA – MAT STÖÐU OG TÆKIFÆRI
MAT Á STÖÐU OG TÆKIFÆRI TIL AÐ ÞRÓA ÚRKOMNARÁÐSTAFANIR FYRIR ÞAÐ ÍBÚA SEM ÞAÐ hefur orðið fyrir áhrifum Þetta er upptaka af fyrsta degi vinnustofunnar, haldinn 4. nóvember 2021, og var...
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