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…
Leer másReal 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…
Leer másDEE-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…
Leer másDEE 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…
Leer másWhy 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…
Leer másGRABACIÓN – Medidas anticipadas de resultados para las poblaciones gravemente afectadas
Creación de un consorcio para promover medidas de resultados para las poblaciones gravemente afectadas Esta es una grabación del segundo taller, celebrado el 11 de noviembre de 2021, centrado en la creación de un consorcio para promover...
Leer másREGISTRO – EVALUACIÓN DEL ESTADO Y OPORTUNIDADES
EVALUACIÓN DEL ESTADO Y OPORTUNIDADES PARA EL DESARROLLO DE MEDIDAS DE RESULTADOS PARA LAS POBLACIONES MÁS AFECTADAS Esta es una grabación del primer día del taller, celebrado el 4 de noviembre de 2021, y fue…
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