Video Archives

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…

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,…

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…

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.…

Protección del acceso poco común a tratamientos no aprobados

Este seminario web se grabó el 22 de mayo de 2023. ¿Se han negado las compañías de seguros o Medicaid a cubrir tratamientos recetados críticos alegando que no estaban indicados en la etiqueta y que no eran “médicamente necesarios”? ¿Se niega la cobertura...?

Aprenda cómo maximizar sus datos con el CRID

This webinar was recorded on April 28th, 2023. Watch to learn more about the Clinical Research ID (aka The CRID™), a service that enables patients and parents (and their child/children)…

Problemas gastrointestinales y trastornos del desarrollo neurológico

This webinar was recorded on February 13th, 2023. In this webinar, hear about GI issues such as reflux, feeding tubes, constipation, and more! Speakers: Russ Zwiener, pediatric GI doctor and KdVS…