Decoding Developmental Epilepsies
Bringing resources, research, and results to the DEE community
Our core mission is to improve the lives of DEE families by implementing cutting-edge programs and research. We collaborate with families, researchers, clinicians, and industry partners across the globe to more rapidly find answers.
Support Decoding Developmental Epilepsies today to help us improve the lives of families impacted by developmental and epileptic encephalopathies (DEEs)!
Through our education programs and by implementing cutting-edge research, we are working for a better future for those with DEEs and their families
Our Core Principles
Urgency.
We know time is not on the side of our children.
Collaboration.
We work smarter together.
Science-focused.
We advance evidence-based care.
Filling the gaps.
We seize targets of opportunity.
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Our Story
Developmental and epileptic encephalopathies (DEEs) are a varied group of rare, catastrophic epilepsies. Characteristics of DEEs include seizures, behavioral disturbances, and/or EEG abnormalities that have negative effects on cognition and behavior. DEEs are often progressive and highly resistant to treatment.
What began as a family’s personal quest to understand a devastating diagnosis has evolved into a global initiative — one that brings curated information and resources to families, promotes the advancement of improved care and hosts research efforts to improve the quality of life for all DEEs.
Decoding Developmental Epilepsies (DDE) is a 501(c)(3) nonprofit organization and the successor to Wishes for Elliott.