Weekly Updates! - May 2, 2025

Weekly Updates! - May 2, 2025

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

• NEW: Dutch translations available for many TBRS Community resources!
  • Many thanks to our Regional Coordinator for the Netherlands, Nathalie de Lange, for translating many TBRS Community materials into Dutch!
  • These resources are now available in Dutch:
    • Count Me In for TBRS
    • Patient Priority Survey
  • Coming soon:
    • TBRS Baseball card
    • New Family Welcome Packet
    • Overgrowth Syndromes Alliance brochure
  • Many thanks again to Nathalie, and all of our Regional Coordinators, for all of the hard work they do!

• Upcoming: Special Presentation - TBRS Disease Impact
  • This event will take place Wednesday, May 7, 2025 at 4:30 PM Eastern Time via Zoom
  • Here is the link to register: https://givebutter.com/TBRSdcm
    • We’re excited to share that Mylie, a graduate student in Genetic Counseling who recently completed a Disease Concept Model for Tatton Brown Rahman Syndrome (TBRS), will be presenting her findings to the TBRS Community!
    • This presentation will highlight the real-life impacts of TBRS on individuals and families, as captured through interviews and research. It’s a chance to hear how your stories and experiences are helping shape the understanding of TBRS in the research and medical world.
      • We hope you'll join us for this important conversation! If you are unable to attend, please sign up anyway! We will share a recording with those who are unable to attend live.

• • SAVE THE DATE: 2026 TBRS Summit
    • The TBRS Summit is planned for early 2026!
      • WHEN: Weekend of March 21, 2026
      • WHERE: Morgan’s Wonderland Camp in San Antonio, TX, USA
    • The TBRS Summit is where the magic happens—families, researchers, and clinicians come together to connect, learn, and push forward the future of TBRS care and research.
    • Stay tuned for more details, including registration and agenda updates!

Thanks! Please reach out to me with any questions at kit@tbrsyndrome.org.Kit Church, CARE Manager