15 Jan, 2025 Launch of new TBR1 Syndrome website

TBR1 Syndrome Launches a New Global Website to Support Families and Advance Awareness

We are proud to announce the launch of the new TBR1 Syndrome website—a dedicated resource for families, researchers, clinicians, and advocates around the world. The redesigned site provides clearer information about TBR1-related neurodevelopmental disorders, expanded family stories, and improved access to support tools for rare disease navigation.

Our goal is simple: to ensure no family receiving a TBR1 diagnosis feels alone, and to amplify global awareness of this extremely rare genetic condition. The site will continue to expand with updated research summaries, community resources, and new family stories.

read more