This past August our SETBP1 community gathered together virtually at the 2020 Simons Searchlight Conference for SETBP1 families. We learned more about the SETBP1 disorder phenotype, strategies to deal with challenging behaviors, how to read lab reports, attention issues, updates from SETBP1 Society and much more! The conference spanned 2 weekends. Check out the 3 […]
SETBP1 Society is pleased to share the funding opportunity offered by the 2020 Million Dollar Bike Ride Grant Program sponsored by the University of Pennsylvania Orphan Disease Center! They are NOW ACCEPTING LETTERS of INTEREST to apply for one $80,746 SETBP1 Disorder research grant or one of two $40,373 SETBP1 Disorder research grants. The purpose […]
SETBP1 Society is pleased to announce the availability of several new resources. SETBP1 Disorder Information Sheet SETBP1 Society is proud to announce the release of our SETBP1 disorder Information Sheet. This is a helpful resource for medical professionals, therapists, education providers, newly diagnosed families, and anyone who wants to familiarize themselves with SETBP1 disorder. Check […]
