Empowering Families.
Advancing Research. Building Community.
Uniting families, scientists, and clinicians, we advance patient-centered research and support for everyone impacted by Tatton Brown Rahman Syndrome (TBRS).
Our Community
Tatton Brown Rahman Syndrome (TBRS) is a complex and rare genetic disorder characterized by overgrowth, varying degrees of intellectual disability, and characteristic facial features that become more apparent with age. TBRS can affect many systems in the body.
The TBRS Community is here to support all families affected by TBRS and to accelerate research that meets patients’ highest priorities. We partner with the world’s leading experts on TBRS to study the disorder, develop treatments, and ensure our loved ones receive the best care.
Real Impact
300+
families, researchers, and clinicians have attended our conferences
Collaborative Research Network
200+
experts
8
research projects funded
Research:
140+
patients recruited for international research studies
60
Patient samples in our biorepository
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