SETBP1 Society supports over 220 families impacted by SETBP1 haploinsufficiency disorder (SETBP1-HD) and related disorders. We have a private Facebook group for parents and caregivers with children (young to adult) affected by SETBP1-HD and related disorders (search for SETBP1 support site/groupe d’entraide) and a Facebook group for extended family (search for SETBP1 Friends and Family). We ask that all of our families complete our SETBP1 Society Contact Registry at https://setbp1.org/contact-registry so we can connect with all of the SETBP1 families, provide information, and also identify all the SETBP1 variants and deletions seen within the community. These are just a few of the children we support. Check out “For Families” section on our website for more help!