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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 simple. There is no formal topic. Instead, we’ll spend time getting to know one another through brief introductions, sharing about our children, and reflecting on…
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 Speak 2 — a caregiver-powered survey helping improve outcome measures. Your voice is essential to advancing clinical trial readiness.
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…
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…
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…
Listening Out Loud: Communicating with Joy
Presented by DEEP in partnership with Rare Birds Foundation Communication is about so much more than words. For children living with developmental and epileptic encephalopathies (DEEs) and other conditions that…
