Community

Connections.
Transformative Outcomes.

Developmental

Indicates that the underlying cause of the condition directly affects brain development, leading to intellectual disabilities, developmental delays and/or the regression of acquired skills.

Epileptic

Refers specifically to epilepsy, a condition where the brain sends abnormal electrical signals that cause seizures which are often very difficult to control with medications.

Encephalopathy

Any disturbance that affects the brain's structure or function that means that the brain is unable to function the way it is supposed to.

A DEE is a condition where someone has frequent seizures that are very difficult to control with available medicines and where the abnormal electrical activity in the brain, as well as the underlying cause, makes it more difficult for the brain to develop and function typically.

Severe

Indicates that the condition causes major, lifelong challenges in physical, cognitive, sensory, and/or communication abilities, often requiring extensive medical, therapeutic, and daily support.

Neurological

Means the condition arises from a disorder of the brain, spinal cord, or nervous system, including genetic, metabolic, structural, degenerative, or unknown causes.

Impairment

Refers to the significant limitations in how the brain or nervous system functions, affecting movement, learning, behavior, feeding, breathing, or other essential skills.

SNIs are serious brain‑based conditions that cause profound challenges in development, movement, communication, and/or daily functioning. Children with SNIs may or may not have seizures. Examples include metabolic disorders, degenerative conditions, profound autism, and many rare genetic disorders.

What DEEP Does

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Education

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Resource Center
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Upcoming Webinars

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Caregiver Support

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Upcoming Support Chats
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WhatsApp Community
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Dinner on DEEP

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Research

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The Inchstone Project

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Advocacy

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FDA Engagements
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DEEP Blog

Our Network

Proudly serving Families, Patient Advocacy Groups, Clinicians, and Researchers

Anne, Jordan’s Mom

"DEEP has meant so much to our family and as an organization does so much to serve those with rare epilepsies, disability and medical complexities."

Kenzie, Charlie’s Mom

"I love that DEEP brings in caregivers to talk about their lived experiences, share resources, and help families understand where to go for support. They’ve worked really hard to build connections across so many different foundations and organizations."

Amanda, Ava’s Mom

"DEEP helps de-silo our communities, bringing us together while building a robust educational pipeline for families."

Kelcey, Liam & Rylin’s Mom

"I love that DEEP brings together so many different resources in one place while also raising awareness for rare and severe epilepsy."

Dami, Marlie’s Mom

"DEEP has supported our family in so many ways: physically through Dinner on DEEP, emotionally by having medical parents on their team who truly understand, and educationally through their webinars."

Dr. Olivia Kim-McMannus

"DEEP is super exciting right now because it's a community that's bringing together all these different advocacy groups and different communities that are individually discovering genes and making advancements within their own groups. But how we push the needle forward faster is together in a community. That's how we're going to advance research, awareness, and collaboration across multiple fronts because there's strength in numbers and I think that's where deep is just leading the way."