The STXBP1 Foundation, established in 2017, is a parent-led advocacy organization leading the charge for a cure to epileptic encephalopathies and related neurodevelopmental disorders caused by changes in the STXBP1 gene. By partnering with physicians, researchers, and other foundations, STXPBP1 has been able to share learning and efficiencies to increase awareness of and identify therapeutic strategies for STXBP1.
The STXBP1 Foundation has partnered with RARE Science to bring awareness and support to children affected by this neurodevelopmental disorder through the RARE Bear Program!
To enroll in the RARE Bear Program and to request a RARE Bear, please complete the form below. We will be contacting your STXBP1 representative, as soon as we are able to match and ship your RARE bears to you!