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 - Coming Soon

Clinical Trials

Curing The Epilepsies

Genetic Modifiers, Biomarkers - Coming Soon

Outcomes And Endpoints - Coming Soon

Participating In Research - Coming Soon

Promoting Research - Coming Soon

Most Recent Research Entries

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Most Recent Webinars & Videos

participating in research

How Effective is Your Epilepsy Care?


The ABCs of Clinical Trials Part 2 – What Every Rare Disease Family Should Know

gentic modifiers

The ABC’s of Clinical Trials Part 1 – The Basics


Curing the Epilepsies Part 2

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