November 14, 2025
Weekly Research Updates! - November 3, 2023
- Collaborations - many ideas, inspired by meeting all of you, reaching out to us and other researchers, reenergized, testament to family involvement and engagement with research community
- Joined the Rare Epilepsy Network
- Free for us to join
- 25-50% of TBRS patients have experienced at least one seizure
- Policy work, resources for epilepsy, shared learning
- Combined Brain
- Know about missing samples, boxers, etc
- Getting variants from me
- Working on getting those out
- RR3 - Dec 8 - emphasis on working groups
- Also announcing 2 research grants for $50k, focus on biomarkers
- Explanation of biomarkers
- Looking into biomarkers and endpoints in other disorders to find possibilities for our disorder
© TBRSyndrome.org. This website is not intended for medical diagnostic use, or as a replacement for professional medical consultation. No information or images on this site may be used or reproduced without the written consent of The Tatton Brown Rahman Syndrome Community.