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. 🌟 […]
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 & […]
As the year comes to a close, we wanted to take a moment to highlight the current breadth and depth of ongoing research efforts for SETBP1-HD in relation to model development. In May 2025, we released our Research Strategy outlining where we are as a Society and where we plan to focus in the years […]
As we spring into 2025 excited for the research and discoveries to come, we look back into the history of SETBP1 Society and SETBP1 haploinsufficiency disorder. From 2011 to today, the last 13 years have laid the foundations of hope for the next scientific breakthrough in SETBP1-HD. Together, we’ve achieved so much. Take a look! […]
SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 4th “SETBP1 Genetics: Bite-sized Breakthrough”. This time, we are looking at a breakthrough article published in Clinical Genetics in 2024 by Haley O Oyler from SETBP1 Society and an esteemed team of medical and professional […]
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 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). […]
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 […]
Webinar for SETBP1 Data Collection Program with RARE-X tomorrow Join us tomorrow for our RARE-X SETBP1 Data Collection Program launch! Register for the Webinar Saturday 5 March at 1pm ET / 10am PT Jointly hosted by SETBP1 Society and RARE-X We look forward to sharing this exciting new step in our efforts to elevate the […]
