Eventos
Por qué son importantes los EEG y qué pueden revelar
¿Alguna vez te has preguntado sobre los beneficios de las lecturas de EEG que reciben nuestros niños? Únase a nosotros para una sesión esclarecedora con el Dr. Jay Pathmanathan, MD de Beacon Biosignals, epileptólogo pediátrico...
Prevención del agotamiento de los cuidadores: un taller sobre cómo desarrollar la resiliencia
Preventing Caregiver Burnout: A Workshop on Building Resilience is brought to you by an amazing mother daughter duo - STXBP1 mom and Social Worker, Amelia Seraphia Derr and her mom,…
Chat comunitario de DEE-P
Únase a nosotros para tener la oportunidad de conectarse con la madre y trabajadora social de STXBP1, Amelia Seraphia Derr, y su madre, Susan Bourgerie, psicóloga, quien dirigió nuestra sesión la semana pasada sobre...
Cortical Visual Impairment and the DEEs
Join us to learn more about Cortical Visual Impairment (CVI) from both caregivers and a teacher of the visually impaired in the rare epilepsies. You'll hear what CVI is, what…
DEE-P Discussion: CVI and the DEEs
Join us for a conversation with caregivers about cortical visual impairment - diagnosis, therapies, adaptations and what life is like with CVI. Our guests will be DEE caregivers of children…
Chat comunitario de DEE-P
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
Chat comunitario de DEE-P
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.
A Gift for Future Generations – Brain Donation: What to Consider and How it Works
In this important discussion with rare epilepsy moms who made the decision to donate theirs children's brain tissue upon death, we will discuss a number of critical elements about this…
The Inchstone Project Community Update – Spring 2024
Please join The Inchstone Project Research Team for an update on the progress of our efforts to create a range of assessment tools that can accurately measure progress in our…
Aumento del acceso a ensayos clínicos y nuevos tratamientos en las EDE
Join us for a conversation about a promising model of clinical trials for new epilepsy treatments that accelerate access to the wider community of DEEs. The “basket trial” design is used…
Traveling with your medically complex child
In this extended discussion, we will hear from a group of DEE moms about how they manage and plan for adventures and travel with their medically complex children - both…
Sleep & DEEs
Join us as we discuss sleep issues within the DEE and rare epilepsies community.
