Webinar
Understanding ASOs & Informed Consent
Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the…
Leer másALL ABOUT The Connected Parent
We are joined by the founder of The Connected Parent, Julie Walters. Julie shares how her life lead her to investing her whole life savings into The Connected Parent platform.…
Leer másAumento del acceso a ensayos clínicos y nuevos tratamientos en las EDE
This is a recording of the webinar held on April 29, 2024. This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to…
Leer másGestionando el viaje con su hijo complejo
In this conversation, you will meet Blyth Lord – mom to Cameron who had a genetic disorder and passed away at the age of 2. She is the Founder of…
Leer másDonación de Cerebro: Qué considerar, cómo funciona y cómo puede ayudar
In this important discussion with rare epilepsy moms who made the decision to donate their children’s brain tissue upon passing, we discuss a number of critical elements about this deeply…
Leer másPrevención del agotamiento de los cuidadores: un taller sobre cómo desarrollar la resiliencia
This workshop on on Building Resilience and Preventing Caregiver Burnout was held with an amazing mother daughter duo – STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
Leer másPor qué son importantes los EEG y qué pueden revelar
This is the recording of the DEE-P webinar which was recorded on October 12, 2023. Have you ever wondered about is there was more we could learn from the EEG…
Leer másNo diagnosticado
This DEE-P Discussion was recorded on September 13, 2023. During this DEE-P Discussion, we explore the experience of having a child with an undiagnosed rare epilepsy disorder. We discuss different…
Leer másCurso intensivo del IEP
This webinar was recorded on August 15th, 2023. The IEP process can be overwhelming and intimidating. In this session, Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, provides…
Leer másSalud ósea para las DEE
This is the recording of the DEE-P webinar which was recorded on August 5, 2023. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse…
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