The SETBP1 Society is excited to share the launch of our new Parent Speech & Communication Survey Results Report, created from responses provided by families across the global SETBP1 community. In early 2026, 111 parents and caregivers participated in this community survey, sharing their experiences, challenges, insights, and successes related to speech, language, AAC, and […]
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 […]
My name is Sophie, and I’m a clinical-community psychology Ph.D. student at the University of South Carolina in the Brain Research Across Development (B-RAD) Lab under the mentorship of Dr. Caitlin Hudac. Many of you may know me from doing EEGs with your children at the 2024 Family and Researcher Conference, 2025 Million Dollar Bike […]
SETBP1 Genetics: Bite-Sized Breakthroughs Breaking down new breakthroughs in SETBP1 research in an easy to digest way Welcome to our 5th “SETBP1 Genetics: Bite-sized Breakthrough”. This time, we are looking at a breakthrough article published in Molecular Autism in 2024 by Dr Nicole Shaw and Dr Vanessa Fear from Telethon Kids in Australia. This publication […]
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 […]
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 […]
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). […]
Our 2024 SETBP1 Community Survey is available for SETBP1 families to complete in English, Dutch, French, German, Italian, Portuguese, and Spanish. We want to hear from you! Please take about 15 minutes to complete this short survey There is an additional section included for SETBP1 parents and caregivers of young adults as we have very […]
New Speech and Language Resource for SETBP1-HD The team at the Speech and Language Centre of Research Excellence at Murdoch Children’s Research Institute partnered with SETBP1 Society to provide a new resource for SETBP1 families. This resource focuses on the identified speech and language difficulties experienced by children with SETBP1 haploinsufficiency disorder (SETBP1-HD). SETBP1 families […]
Recorded presentations from our brilliant 2022 Simons Searchlight Family & Research Conference for SETBP1 families are NOW AVAILABLE!! Check out the Presentation List below and select the associated links to watch the recorded presentations! SETBP1 Talks Welcome from Haley, SETBP1 Society President – Watch Simons Searchlight Registry Update and Q&A | Speaker: Wendy Chung – […]
