Month: August 2024

Join us in Austin, TX for our Family Conference!

Join us in Austin, TX for our Family Conference!

by haley / On Posted in Collaboration, Events, Research

The SETBP1 Family & Research Conference is THIS OCTOBER from Friday early evening on the 11th through Sunday lunch on the 13th in Austin, TX! Our Empowering Independence-themed conference provides you the opportunity to ask your burning questions from SETBP1 medical specialists, researchers and therapists, to hear about the latest SETBP1 research findings, to connect […]

SETBP1 Community Survey – 2024

SETBP1 Community Survey – 2024

by haley / On Posted in Resources

SETBP1 Society provided a survey to the SETBP1 Community for parents and caregivers to complete starting in April earlier this year. The survey was available in 7 languages including English. Ninety-one surveys were started and 61 were fully completed with 7 mostly completed. The survey was designed to help us better understand how SETBP1-HD and […]