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…

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…

SETBP1 Genetics: Bite-Sized Breakthroughs — Motor Speech Disorders

SETBP1 Genetics: Bite-Sized Breakthroughs — Motor Speech Disorders This latest study—the largest of its kind—found a strong genetic link between…

SETBP1 Genetics: Bite-Sized Breakthroughs — SETBP1-Related Disorders

SETBP1 Genetics: Bite-Sized Breakthroughs — SETBP1-Related Disorders New Publication Identifies a Third, Distinct SETBP1-Related Neurodevelopmental Disorder We are excited to…

2025 SETBP1-HD Model Overview Update

As the year comes to a close, we wanted to take a moment to highlight the current breadth and depth…

2025 SETBP1 Community Survey Results Now Available

2025 SETBP1 Community Survey Results Now Available We’re excited to share the results of our 2025 SETBP1 Community Survey! 💙…

SETBP1-HD/SETBP1-RD Education Guide

My name is Sophie, and I’m a clinical-community psychology Ph.D. student at the University of South Carolina in the Brain…

SETBP1 Society Research Strategy: A Roadmap Toward Treatments and Therapeutics

At SETBP1 Society, we are committed to a singular mission: advancing research that leads to effective treatments and improved quality…

Looking back - SETBP1 Society & SETBP1-HD Timeline

As we spring into 2025 excited for the research and discoveries to come, we look back into the history of…

Faces of SETBP1

SETBP1 Society supports over 220 families impacted by SETBP1 haploinsufficiency disorder (SETBP1-HD) and related disorders. We have a private Facebook…

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…

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…

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