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:
- Coming soon:
- 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!
- The TBRS Summit is planned for early 2026!
- SAVE THE DATE: 2026 TBRS Summit
Thanks! Please reach out to me with any questions at [email protected].
Kit Church, CARE Manager