SETBP1 Society is partnering with the University of Pennsylvania Orphan Disease Center to raise funds for SETBP1 disorder. Stand Strong with us and help us advance research for SETBP1 disorder.

The Orphan Disease Center will match dollar for dollar funds all funds we raise above $20,000 and up to $30,000. 100% of the registration and donation funds will go towards SETBP1 disorder research! The SETBP1 Strong Team has a goal to raise $40,000, which would give us $70,000 (matching included) for SETBP1 disorder research!
SETBP1 disorder is a rare neurodevelopmental disorder caused by a mutation of the SETBP1 gene on the 18th chromosome. It is characterized by developmental delay, autistic traits/autism, cognitive disability, speech and language delays, add/adhd, and hypotonia. SETBP1 disorder is a random mutation and affects all races and both genders equally. Loss of SETBP1 causes the body to produce less of the SETBP1 protein which is needed for brain development. There are no treatments specific to SETBP1 disorder. We need more research to better understand why SETBP1 is needed for typical brain development and to help us find treatments to improve the quality of life for all individuals impacted by SETBP1 disorder.
SETBP1 Society is a volunteer-based 501(c)3 registered nonprofit dedicated to supporting individuals with SETBP1 disorder and their families, promoting discussion and funding research, and bringing awareness and education to the public.