Weekly Research Updates! - February 2, 2024
Hello all! Hope it’s been a good week so far. Here are my updates from this week:
- EVENT: Regional Coordinator intro meeting
- Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, planning events for the area, and ensuring that all TBRS families are receiving the support they need.
- For more information on this role, please visit the TBRS Volunteer form (page 6).
- The Regional Coordinator introductory meeting has been scheduled for Monday, February 5, from 3-4pm EST.
- If you are interested in becoming a Regional Coordinator, or if you are undecided but have questions, please join us! Register here.
- If you are unable to attend, please contact me at [email protected]
- Regional Coordinators are volunteers located across the globe who are responsible for sharing TBRS Community programming and research information with their region, planning events for the area, and ensuring that all TBRS families are receiving the support they need.
- CRN Working groups
- The TBRS Community is starting a working group among members of our Collaborative Research Network.
- Working groups bring together scientists, researchers, and clinicians to work on specific issues and goals.
- This working group will be focused on developing diagnostic criteria and clinical guidelines for TBRS.
- Creation of these materials is a high priority for the TBRS Community to ensure that patients are being properly diagnosed and receiving the care they need.
- We hope this will also help to classify variants of uncertain significance!
- This group will meet every other month for 1 hour to work on this project. I will provide more information on this after our first meeting!
- RESEARCHERS/CLINICIANS: if you are interested in joining the working group, email me at [email protected]
- The TBRS Community is starting a working group among members of our Collaborative Research Network.
- The next TBRS Community Newsletter
- This newsletter will feature information on this blog, as well as some of our successes from 2023
- Coming soon–Look out for it in your email!
- TBRS Translation Accelerator Grant
- REMINDER: The TBRS Community is currently offering two $50,000 grants, which will be awarded to support and accelerate therapeutic development for Tatton Brown Rahman Syndrome.
- The deadline for these applications was yesterday, February 1, 2024 at 11:59 EST.
- We’ve received some great submissions! I am excited to share the winning submissions with you soon!
- Click here to view the full grant announcement and application process.
- REMINDER: The TBRS Community is currently offering two $50,000 grants, which will be awarded to support and accelerate therapeutic development for Tatton Brown Rahman Syndrome.
Have a great weekend!
Kit Church, Research Coordinator
