Tatton Brown Rahman Syndrome Community Inc

Collaborative Research Network: Over the past year, the TBRS Community expanded its Collaborative Research Network (CRN) by fostering cross-disciplinary partnerships, centralizing data, and prioritizing patient-driven research goals. We increased the TBRS Patient Registry to over 200 participants, making it a vital resource for scientific discovery. Additionally, we developed a strategic research roadmap to guide efforts toward clinical outcomes and ensure open access to data, accelerating the path toward effective treatments.

Education: In the past year, the TBRS Community delivered critical education and advocacy programs, including:Raising awareness of seizures, cardiac concerns, and cancer risks through scientific publications and advocacy efforts.Launching a Future Planning Series with expert-led sessions on long-term care, financial planning, and adult services, supporting families in making informed decisions.Hosting family education webinars, social groups, and parent support networks, strengthening community connections and equipping families with research and clinical insights.