November 14, 2025
Weekly Updates! - March 15, 2024
Hello everyone! Hope you’re having a great week. Here are some TBRS Community updates from this week:
- TBRS Baseball Card
- The TBRS Community Baseball Card is designed to be a quick resource for information on TBRS and specific information about the diagnosed individual.
- This card is great for sharing with clinicians, healthcare providers, caregivers, teachers, and other members of your care community.
- This resources is currently translated for English and German, with Spanish coming soon!
- For more information or to create a baseball card, click here.
- The TBRS Community Baseball Card is designed to be a quick resource for information on TBRS and specific information about the diagnosed individual.
- New Family Welcome Packet
- The TBRS Community has designed a New Family Welcome Packet that contains all of the important information on participation in research, community programs, and current knowledge on TBRS.
- This packet is designed to support the newly diagnosed, but contains important information for all families in the TBRS Community.
- Click here to view the packet.
- The TBRS Community has designed a New Family Welcome Packet that contains all of the important information on participation in research, community programs, and current knowledge on TBRS.
- TBRS Translation Accelerator Grant
- Reminder: The TBRS Community is offering two $50,000 grants to support and accelerate treatment development for Tatton Brown Rahman Syndrome. For more information, click here.
- We have received 5 applications for this grant!
- 5 reviewers have evaluated these grant applications, and we will be announcing the recipients of these grants soon.
- Stay tuned!
- Rare Disease Summit
- I will be attending the Rare Disease Summit in Philadelphia this coming week.
- Topics at this Summit include: Advocacy, partnering with industry (pharma and biotech), diagnosis, research tools, and disease treatment.
- Reminder - Spain and France conference
- 2 TBRS Community conferences are being held this March:
- Burgos, Spain - Friday, March 22 - Sunday, March 24, 2024
- Cost: free
- For more information, click here.
- Nancy, France - Friday March 29, 2024
- Cost: free
- For more information, click here.
- Burgos, Spain - Friday, March 22 - Sunday, March 24, 2024
- 2 TBRS Community conferences are being held this March:
Thank you, and I hope you have a great weekend!Kit Church, Research Coordinator
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