Advancing Care, Knowledge, and Connection Through Clinical Education

The TBRS Community is proud to share the impact of a $20,000 grant from the Gordon Hartman Family Foundation, which supported the expansion of our Clinical Education Series and strengthened resources for families and clinicians navigating Tatton Brown Rahman Syndrome (TBRS).

‍
TBRS is a rare and complex genetic condition that affects nearly every system in the body. Because fewer than 500 individuals worldwide have been identified, many families experience delayed diagnoses and limited access to informed care. This grant allowed us to directly address those gaps by turning emerging research into practical, accessible education and resources.

‍
“Families affected by TBRS are often asked to become experts overnight, without access to clear or consistent guidance,” said Jill Kiernan, Founder and Executive Director of the TBRS Community. “Support from the Gordon Hartman Family Foundation allowed us to bring the latest research directly to families and clinicians, translate it into practical care guidance, and ensure that people around the world could access this information when they needed it most.”

‍
Expanding our Clinical Education and Outreach Series

‍
With support from the Gordon Hartman Family Foundation, we hosted several live, virtual education and outreach sessions focused on issues that matter most to TBRS families and clinicians, including cardiac risks and surveillance, cancer and leukemia, mosaicism in TBRS, the current state of gene therapy investigation, and the TBRS Disease Concept Model, which captures how TBRS affects patients and caregivers. These sessions brought together families, clinicians, and researchers from around the world to share knowledge, ask questions, and better understand the evolving care landscape for TBRS.

‍
Increasing access through global participation

‍
To ensure families everywhere could participate, we provided live translation during webinars, allowing individuals from multiple countries to attend in real time. Recordings and educational materials were made available afterward so families and clinicians could continue learning at their own pace.

‍
Launching a new TBRS Community website

‍
The grant also supported the launch of a redesigned TBRS Community website, which now serves as a centralized hub for the most current TBRS information. The site includes updated clinical information, surveillance recommendations, and downloadable TBRS fact sheets for families and providers, helping ensure access to reliable, up-to-date guidance.

‍
Building connection through TBRS Family Connect

‍
In addition to education and resources, this funding helped launch TBRS Family Connect, a secure, TBRS-administered online community where families can connect, share experiences, and exchange resources in a supportive environment. This space was designed to strengthen peer connection and reduce isolation for families navigating TBRS.

‍
With gratitude

‍
We are deeply grateful to the Gordon Hartman Family Foundation for entrusting us with the resources to develop these impactful programs. Their support has helped improve access to knowledge, strengthen care, and foster connection for individuals and families living with TBRS around the world.

‍
Together, we are ensuring that no family navigating TBRS has to do so without guidance, support, or community.