About STXBP1 Foundation
The STXBP1 Foundation is a parent-led organization dedicated to: creating awareness to disorders associated with STXBP1 mutations; funding and driving research to accelerate discovery of a cure; providing families with tools to help them understand the disease & how to get involved; advocating to improve early detection; fostering activism to help change policies in favor of orphaned diseases; and improving the lives of our STXBP1 family. We plan to have a representative at the NIH Rare Disease Day in Bethesda, MD and to share the messages of Rare Disease Day on social media.