Hello. I hope everyone has had a great week. I have a few updates I’d like to share:

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• NEXT MONDAY: Join Us for a Special Talk on Hematology & Oncology in TBRS – with Dr. Rachel Rau 

• • We’re excited to welcome Dr. Rachel Rau for a special presentation on June 9 at 5 PM EST, where she’ll discuss hematology and oncology considerations for individuals with Tatton Brown Rahman Syndrome (TBRS). 
  • This session is a valuable opportunity for families and patients to learn from an expert in the field and better understand the latest insights related to blood and cancer-related health concerns in TBRS.
    • Don’t miss this chance to ask questions and stay informed—register here and join us live!  
    • If you are unable to attend, please sign up – a recording will be sent to families who are unable to attend!

• RECAP: CZI Science in Society Meeting

• • • Last week, Jill and I attended the Science in Society meeting hosted by the Chan Zuckerberg Initiative (CZI)!
      • This conference brought together researchers, funders, and advocates from across rare disease and research communities to talk about how we can make science more impactful and inclusive.
    • A major focus was on cross-disease collaborations—just like the Overgrowth Syndromes Alliance and COMBINEDBrain. These partnerships allow rare disease groups to work together to speed up discoveries that help all of us.
    • There was also a big emphasis on improving medical awareness, expanding mental health care resources, and building stronger tools to support patient-partnered research.
      • We’re proud that the TBRS Community is already doing many of these things—and we’re always learning new ways to grow our impact!

• Collaborative Meetings with the RTW Foundation

• • The RTW Foundation has been helping advise us behind the scenes for some time—offering expert scientific insight to make sure our research strategy is as strong and impactful as possible.
    • In the coming weeks, we’ll begin a round of meetings with the RTW Foundation and members of our TBRS research network!
    • These new meetings will bring our researchers and the Foundation together to discuss progress, identify gaps, and prioritize what comes next.
  • We’re excited to continue building a thoughtful, patient-driven research agenda—one that helps accelerate discoveries and improves care for everyone in the TBRS Community.
    • We’ll be sure to share updates and insights from these meetings along the way!

Thanks! Please reach out to me with any questions at [email protected]. Happy weekend!

Kit Church, CARE Manager