Weekly Updates! - November 22, 2024

Weekly Updates! - November 22, 2024

Hey everyone! I hope everyone has had a great couple of weeks. Unfortunately, I’ve had a cold from traveling, but I still have some TBRS Community updates and reminders for this week:

• I attended the Ultragenyx Rare bootcamp last week

• • • This event is designed to inform patient organizations about all the steps related to treatment and therapeutic development
      • I was also able to talk with leaders in the field about our options for treatments and what steps are best to take to reach them!
    • Though we don’t have a treatment yet, it was inspiring to talk with industry and other groups who have developed therapies, and to learn more about the best path forward.

• Sign up for Citizen Health to accelerate TBRS research!
  • Exciting News: Citizen Health, formerly Ciitizen, has launched a brand new onboarding experience - and it’s better than ever!
    • We’ve teamed up with Citizen Health for the easiest way to build vital natural history studies for our community.
    • Citizen Health is a program that will collect all medical records in one convenient, online location. These records can then be shared with researchers, if you so choose!
  • Help us reach our goal! It just takes five minutes to sign up, completely digital.
    • We need 7 more participants by the end of November to access exciting new data for research!
    • Citizen Health is currently only able to collect records for participants in the United States, BUT participants can join around the globe and upload their own documents.
      • Citizen Health is currently running trials to expand to other English-speaking countries, and then plan to extend further!
  • Click here to sign up for Citizen Health!

• Upcoming Study Using TBRS Patient Registry Data

• • Dr. Kate Tatton-Brown is planning to publish on the TBRS Patient Registry data, particularly on symptoms and experiences of those with TBRS!
    • This will greatly help us to have solid information on lesser-known symptoms of TBRS, and improve clinical care for those with TBRS
  • If you have not participated in the Registry and would like to be involved, please consider signing up and completing surveys by December 1, 2024!
  • REMINDER: you are not required to participate in the TBRS Patient Registry and can revoke consent at anytime
    • To participate in the TBRS Patient Registry, click here!

• REMINDER: The Power of Sharing Personal Stories and Wins!
  • As we prepare our annual report to showcase all that the TBRS Community has accomplished, we’re reminded of how important each family’s voice is in shaping our progress.
    • We’d love to include stories and personal wins from our patient and family community to celebrate your journeys and bring a heartfelt touch to our report.
    • Your experiences give life to our mission, inspire others, and highlight the strength of our community.
  • If you’re interested in sharing, please reach out by email to kit@tbrsyndrome.org - we’d be honored to include your story!

Thanks and I hope you have a great weekend!Kit Church, CARE Manager