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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, Susan Bourgerie, a psychologist. Their workshop is based on the belief in our innate capacity to adapt, recover, and even thrive despite the effects of…

Join us for an opportunity to connect with STXBP1 mom and Social Worker Amelia Seraphia Derr and her mom, Susan Bourgerie, a psychologist, who led our session last week on…

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…

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…

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

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…

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…

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…

Join us as we discuss sleep issues within the DEE and rare epilepsies community.

DEE-P Connections, in association with DYNC1H1 Association, is excited to welcome Advocacy Abby, who will assist families with medically complex children in navigating the complexities of grants and other funding…