Research & Advocacy

DNA Color - Strands

As DEE families know all too well, treatment of most of our rare diseases is plagued by major areas of medical uncertainties. Recognizing that the only real hope for substantial improvements in the quality of life of our children is research. The research category covers a range of topics including quality improvement efforts, clinical trials, national research priorities, and brain and tissue banks.

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Research Categories

Brain Tissue Donation

Clinical Trials

Curing The Epilepsies

Genetic Modifiers, Biomarkers - Coming Soon

The Inchstone Project

Managing Your Data

Participating In Research

Most Recent Research Entries

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Most Recent Webinars & Videos


Why EEGs Matter and What They Can Reveal

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RECORDING – Advance Outcome Measures for Severely Affected Populations



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