The STXBP1 Foundation is a non-profit parent organization dedicated to ending STXBP1-related disorders. We are comprised of a diverse team of families and their supports, scientists and medical professionals. In fostering partnerships with physicians, researchers, and other foundations, we share learnings and efficiencies to increase awareness of this rare, genetic disorder and accelerate the time to finding a cure. We believe that through our work, we are leading the charge towards improved therapies and ultimately ending STXBP1-related disordesr. Our International STXBP1 Family has grown tremendously to 1000+ united and strong and we will only continue to grow our numbers as other families have access to genetic testing.

Our Mission:
-Create awareness in the disorders associated with STXBP1 mutations
-Fund Research to accelerate discovery of a cure
-Provide families with tools to help them understand the disease & how to get involved
-Advocate to improve early detection
-Foster activism to help change policies in favor of orphaned diseases
-Improve the lives of our STXBP1 Family


STXBP1 Foundation

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