We’re excited to share the release of the updated Tatton Brown Rahman Syndrome (TBRS) Fact Sheet, now featuring expanded sections on cardiology and hematology/oncology. These additions reflect the most current knowledge about heart conditions, blood disorders, and cancer risks associated with TBRS.
This progress is only possible because of the families who contributed to the TBRS and DNMT3A Patient Registry, along with the dedication of clinicians and researchers working to better understand this newly identified rare disease. Their combined efforts have helped us accelerate the timeline of discovery—turning years of clinical observations into actionable insights.
The updated fact sheet includes:
A summary of common and emerging symptoms in TBRS
Expanded detail on aortic root dilation, including new data from our community
Information on reported blood cancers and solid tumors, with practical information for conversations with your care team
Information for clinical specialists to consider as part of care coordination
Please remember: This fact sheet is not medical advice and not a substitute for individualized care. It is a resource to help guide discussions between families and their healthcare providers.
Thank you to every family who shares their story, and to the medical professionals who are helping us build a better future for people with TBRS.