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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…
FreeSurviving 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,…
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…
Pulmonary Decision-Making: Navigating Respiratory Care for Medically Complex Children
📅 February 5, 2026🕛 12:00 PM CT | 1:00 PM ET | 10:00 AM PT💻 Live on Zoom Pulmonary care decisions can be some of the most complex and emotionally heavy…
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…
Seizure Clusters vs. Status: What Every Caregiver Needs to Know
When seizures escalate, knowing what you’re seeing and how to respond can make all the difference. In this webinar, we’ll break down the key differences between acute repetitive seizures (seizure…
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 caregivers, clinicians, researchers, and advocates seeking a clearer understanding of how ASOs work, where they fit within today's treatment landscape, and how families can approach…
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 us for a virtual DEEP Chat created specifically for caregivers and families of children with an epileptic spasms diagnosis. This is a welcoming space to…
A Caregiver’s Guide to Seizure Medications
Presented by DEEP in partnership with CDKL5 in Color Seizure medications are one of the most common and important tools used in epilepsy care, yet many families find themselves trying to understand unfamiliar medication names, treatment plans, side effects, and frequent medication changes. Learning how anti-seizure medications work and why they are prescribed can help…
