Two Powerful SETBP1 Webinars You Won’t Want to Miss

by haley / On March 29, 2026Posted in Events

🌟 Two Powerful SETBP1 Webinars You Won’t Want to Miss

This spring, we’re bringing our community two exceptional learning opportunities — each led by world‑renowned experts who have shaped what we know about SETBP1 neurodevelopmental disorders. Whether you’re a newly diagnosed family or have been part of our community for years, these sessions offer clarity, connection, and the chance to ask your most important questions.

🔍 Different Faces of SETBP1: An Ongoing Journey

Live Webinar — Saturday, April 11th
11:00am CDT / 12:00pm EDT / 6:00pm CEST

We’re honored to welcome Bregje van Bon, MD, a clinical geneticist and the Head of Clinical Genetics at Radboud University Medical Center in Nijmegen, the Netherlands. Dr. van Bon was one of the first specialists to recognize that SETBP1‑HD is distinct from SETBP1‑RD, and she has now seen more individuals with SETBP1 than any other clinician in the world.

In this session, Dr. van Bon guided us through the evolving understanding of SETBP1 neurodevelopmental disorders — from the earliest cases to what we know today. Families gained a clearer picture of the clinical landscape, how thinking has shifted over time, and what these insights mean for care and research.

A live Q&A followed, giving parents a rare opportunity to speak directly with one of the field’s leading experts.

Check out the Recorded Different Faces of SETBP1 Webinar

🗣️ SETBP1 Communication Landscape

Live Webinar — Wednesday, May 13th
5:00pm CDT / 6:00pm EDT / 11:00pm UK / Thursday, May 14th 8:00am AEST

Communication is one of the most important — and often most complex — parts of the SETBP1 journey. We’re thrilled to host Prof Angela Morgan and Marissa Mitchel, two speech‑language pathologists and researchers who work closely with our SETBP1 Bees and have contributed foundational insights to the field.

Together, they’ll explore:

Core motor speech features such as Childhood Apraxia of Speech (CAS) and Dysarthria
How these differ from general speech delay
Evidence‑based approaches that best support our kids
Findings from the Parent Communication & Speech Therapy Survey
SETBP1 communication resources available to families

This webinar is a chance to deepen your understanding of your child’s communication profile and learn directly from experts who have spent years studying SETBP1 speech and language.