Weekly Updates! - October 4, 2024

Weekly Updates! - October 4, 2024

Hello everyone! I hope everyone has had a nice couple of weeks. Here are some TBRS Community updates and reminders for this week:

• Global Genes Rare Advocacy Summit

• • • Last week, I attended the Global Genes Rare Advocacy Summit in Kansas City, MO, USA, to represent our Community.
      • This event brings together people who work with rare diseases, including patients, families, researchers, and organizations, to help improve care and support for these conditions.
    • The summit focused on important topics like helping families get involved in research, learning how to navigate health policies, and working together with other rare disease groups.
    • It also highlighted how families can shape research and why it’s so important for us to be part of these efforts!
      • I’m very excited to implement some of these learnings in my position and with our Community!

• EVENT: Halloween Social - October 19, 2024

• • • We are hosting a Halloween Social on Saturday, October 19 from 12-1pm ET.
      • This meeting will be a fun opportunity for diagnosed individuals and families to play games and have fun!
    • We are also looking for volunteers for this social, as well as future events. Many thanks to Jane Hatton for organizing this event, but she could still use some help!
      • If you are interested in volunteering for this or any future socials, please reach out to Jane at rusty06084@gmail.com.
    • All are welcome to attend. Halloween costumes are encouraged, but not required. Come ready to have some spooky fun!
      • Zoom link: https://us02web.zoom.us/j/85713970693…
      • Code: 232600

• Reminder: Opportunities to donate to the Biorepository

• • • Thanks to everyone who donated to the Biorepository in Kansas City last weekend! If you are interested in donating, we still have a few opportunities left for this year!
      • The TBRS Biorepository is a collection of patient blood samples and other tissues that are readily accessible for research.
    • Below are the dates for upcoming rare disease conferences where you can donate to the Biorepository:
      • November 11 - Nashville, TN
      • December 5-6 - Los Angeles, CA
    • If you are interested in donating to the TBRS Biorepository at any of these locations, please contact kit@tbrsyndrome.org.

Thank you, and I hope you have a great weekend.Kit Church, CARE Manager