April 4, 2026
Hey all! I have a few quick reminders this week:
- Resource Highlight: TBRS Surveillance Recommendations
- We’ve created a guide to help families and doctors keep track of common health needs in TBRS and support ongoing care!
- Read it here and share with your clinical team!
- This Resource May Change Over Time
- Our understanding of TBRS is always growing, so parts of this guide may be updated in the future.
- Questions? We’re Here to Help
- If you or your care team have questions or want help using this guide, please reach out—we’re happy to work with your clinicians and share the latest information!
- We’ve created a guide to help families and doctors keep track of common health needs in TBRS and support ongoing care!
- REMINDER: Lets learn more about bone health in TBRS!
- Dr. Vicken Totten, a parent of a person with TBRS, is conducting a research study about bone health in people with Tatton Brown Rahman syndrome (TBRS).
- If your child or loved one has a TBRS diagnosis, you can help by completing a short survey about bone-related concerns such as fractures, pain, or other bone issues.
- Participate by using this link
- Dr. Vicken Totten, a parent of a person with TBRS, is conducting a research study about bone health in people with Tatton Brown Rahman syndrome (TBRS).
Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org. Happy weekend!
Kit Church, CARE Manager
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