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).

Find What You Need – Fast

Tatton Brown Rahman Syndrome (TBRS) is a complex and rare 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.

Individuals may present with autism, joint hypermobility, low muscle tone, kyphoscoliosis, seizures, behavioral and mental health disorders, heart defects, obesity, hearing and vision concerns, sleep apnea, blood disorders, and an increased risk for certain cancers, especially leukemia.

You Are Not Alone – Join the Conversation

Whether you’re a parent navigating a new diagnosis or a researcher seeking collaboration, our private, secure forum provides a place to connect, share experiences, and find answers.

Real Families, Real Impact

Over

300

families, researchers, and clinicians have attended our conferences

Our clinical research network has grown from

7 to over 200

experts

8

research projects funded

Research:

140+

patients recruited for international research studies

60

Patient samples in our biorepository

“While waiting for these tests, I typed overgrowth into Facebook and up came the TBRS Community page. . . . WOW, I knew then that this is where Flynn belonged.”

Support the TBRS Community –Make a Difference Today

The TBRS Community is a united network of families, researchers, and clinicians working together to support those affected by Tatton Brown Rahman Syndrome. We’re here to connect, to care, and to drive research forward—always keeping patients and families at the center.

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