SETBP1 Society

First Ever International SETBP1 Conference Brings Together Families, Researchers, and Supporting Organizations

The first SETBP1 conference in Austin, TX, united nearly 100 families, researchers, and clinicians to discuss SETBP1-HD, a rare genetic disorder. The event featured updates on ongoing research, fostering independence for those affected, and valuable family-researcher interactions. It emphasized collaboration, education, and support. As Rare Disease Day approaches, the conference underscores the importance of raising awareness and advancing research for rare diseases. - February 26, 2025