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.
  • 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.
  • 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
      • Nancy, France – Friday March 29, 2024        

Thank you, and I hope you have a great weekend!

Kit Church, Research Coordinator

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