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  • Lightening the Load: How AI Can Support Families Managing Complex Care

    Caring for a medically complex child means juggling endless details, from therapy notes and appointments to insurance paperwork and care coordination. Join Jennifer Bloom, parent, caregiver, and advocate, for a practical and encouraging session on how AI tools can help lighten the mental load. Jennifer will share real examples of how she uses AI to…

    Free
  • Surviving The Holidays – A DEE-P Chat

    Join us Monday November 17 at 8pm EST as we chat about navigating the holidays with our medically complex kids. We will be sharing gift ideas, how to create memories, joining family/friends for gatherings, and navigating all the big feelings this season brings!

  • Navigating GI Interventions: From Testing to Treatment

    Join us on December 12 at 3pm CT for a family-centered webinar on GI health in medically complex children. Pediatric gastroenterologist Dr. Sherief Mansi will review feeding and stooling challenges, common testing, and clinical…

  • DEE-P Chat

    Join Shannon and Anne for our next DEE-P Chat — a relaxed, connection-centered space for caregivers of children impacted by Developmental and Epileptic Encephalopathies (DEEs). This month, we’re keeping it…

  • An Evening with Inchstone

    As new treatments move closer to reality, we need better tools to measure meaningful change in our children’s development. Join DEE-P Connections and The Inchstone Project to learn about Parents…

  • West Coast or Night Owl DEE-P Chat

    Join Shannon and Colleen for our next DEE-P Chat — a relaxed, connection-centered space for caregivers of children impacted by DEEs. We’ll spend time getting to know one another through…

  • Understanding ASOs & Informed Consent

    Join DEEP and KCNT1 for an educational webinar exploring the fundamentals of ASO therapies and the critical role of informed consent in rare disease care. This session is designed for…

  • Blended Diets 101: Benefits, Basics & Getting Started

    For many families of tube-fed children, feeding challenges can feel like an ongoing cycle of managing symptoms, adjusting formulas, and searching for solutions. Blenderized tube feeding offers another option that incorporates real food while supporting nutrition, family mealtimes, and quality of life. Join DEEP for an educational webinar with Hilarie Geurink, RD, a pediatric dietitian specializing…

  • Epileptic Spasms DEEP Chat

    Are you a caregiver of someone with epileptic spasms (e.g., infantile spasms, West syndrome, infantile epileptic spasms syndrome (IESS), and epileptic spasms that continue or emerge later in childhood)? Join…

  • A Caregiver’s Guide to Seizure Medications

    Presented by DEEP in partnership with CDKL5 in Color and Rory Belle Foundation Seizure medications are one of the most common and important tools used in epilepsy care, yet many…