STXBP1 - Patient Registry/ Biorepository

A personal campaign sponsored by Anne Johnson

June 5, 2016


We need your help with raising money towards a global patient registry/biorespository.


Why is this so important to us? Currently there is no one large center of information about STXBP1 so phyicians and patients are left with little with treating and managing this orphaned disease. Information gathered through a Patient Registry could help us find answers such as what the evolution of the disorder is and what medications work best for STXBP1.  Specifically, this could mean gaining a better understanding of how our kids could gain full seizure control.

Thank you!

More info STXBP-1 Patient Registry/Biorepository STXBP1 Current Projects 

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