Save the Date: 2026 SETBP1 Family & Research Conference

Save the Date: 2026 SETBP1 Family & Research Conference Austin, Texas • November 6–8, 2026 DoubleTree Suites by Hilton Austin Downtown Capitol We’re excited to announce the dates for our next SETBP1 Family & Research Conference, bringing together families, clinicians, and researchers from around the world for a weekend of connection, learning, and collaboration. 🌟 […]

SETBP1 Parent: Communication and Speech Therapy Survey

New SETBP1 Parent Communication & Speech Therapy Survey — now available in 8 languages! Understanding how individuals with SETBP1 haploinsufficiency disorder and related disorders communicate, and how families support that communication, is one of the most important priorities in our community. Today, we’re excited to share the launch of our new SETBP1 Parent Communication & […]

Early Bird Registration Open till August 20th

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 […]

Faces of SETBP1

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). […]

Bite-Sized Breakthroughs – February 28, 2024

SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our first “SETBP1 Genetics: Bite-sized Breakthrough”, featuring a review article published by Dr. Angela Morgan at Murdoch Children’s Research Institute (MCRI) in Melbourne, VIC, Australia! The article is titled “Genetic architecture of childhood speech disorder: a […]