Gabi Conecker, Author at DEE-P Information Resource Center

Aumento 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…

Gestionando 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…

Donación 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…

Prevención 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,…

Por 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…

No 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…

Curso 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…

Salud 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…

Cuidados poco comunes y desafíos con el cuidado personal: una discusión del DEE-P

This webinar was recorded on June 30th, 2023. Join us for this discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to…

Programas para ayudar a cuidar a nuestros niños complejos: pacientes hospitalizados y ambulatorios

This webinar was recorded on June 7th, 2023. Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e.…