SETBP1 Society

SETBP1 Society was originated and fueled by parents with children with SETBP1 haploinsufficiency disorder and related disorders. Serving as a resource and a community to those families impacted by SETBP1 haploinsufficiency disorder (SETBP1-HD) is our equally driving force. SETBP1 haploinsufficiency disorder is a very rare disorder that is the result of a loss-of-function of one copy of the SETBP1 gene and causes a spectrum of symptoms ranging from absent speech to expressive language delays, mild-severe intellectual disability, autistic-traits or autism, developmental delays and ADHD.