Who We Are

SETBP1 Society

SETBP1 Society was originated and fueled by parents with children with SETBP1 disorder. We want to find answers to the questions:

  • What is the function of the SETBP1 gene?
  • Why does a loss of SETBP1 genetic material cause a neurodevelopmental disorder?
  • What treatments will help our children and children in the future impacted by a loss-of-function of the SETBP1 gene?

Serving as a resource and a community to those families impacted by SETBP1 disorder is our equally driving force.



Our Mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.