You Are Not Alone
Whether you’re newly diagnosed or have been on this journey for years, you’ve found your people. The TBRS Community is here to support, inform, and walk with you through every stage of life with Tatton Brown Rahman Syndrome.
We are parents, caregivers, siblings, self-advocates, and researchers—all working together to make life better for individuals with TBRS.
Just Diagnosed?
You are not expected to know everything at once—we’ve organized the essential info you need into a single place. Take a look at our TBRS Fact Sheet to get started.
We’re Located Everywhere!
Our community spans the globe. Want to see where other families are?
Explore the interactive map to zoom in and connect.
Our families have the chance to connect with a TBRS Regional Coordinator—another TBRS parent or caregiver who helps welcome families, share resources, and answer questions. By filling out Count Me In for TBRS, we’ll connect you with your Regional Coordinator if there’s one in your area.
Join the Family Forum
We’re excited to launch the TBRS Family Forum—a private online space where caregivers, parents, and individuals living with TBRS can ask questions, share stories, and support one another.Whether you’re looking for advice, want to connect with others around the world, or just need a safe place to vent—you belong here.
TBRS Summit
In 2023, we brought together families and researchers from 17 countries for our first-ever TBRS Summit—a joint Family + Collaborative Research event hosted at Morgan’s Wonderland Camp in Texas.
Highlights included
Presentations from leading TBRS researchers
Fun and accessible family activities
Support groups for caregivers
Onsite biospecimen donation drive with 40+ participants
We’ll host our next Summit in March 2026. Stay tuned for updates!
We’re so glad you’re here. Let’s make the TBRS journey a little easier—together.
Our Values
We are committed to fostering a supportive, inclusive, and collaborative network of families, clinicians, researchers, and other stakeholders, always prioritizing the needs of patients.
© TBRSyndrome.org. This website is not intended for medical diagnostic use, or as a replacement for professional medical consultation. No information or images on this site may be used or reproduced without the written consent of The Tatton Brown Rahman Syndrome Community.