Announcing our new Research Council and Patient-Centered Research Strategy!
The Bloom Syndrome Association (BSA) is proud to announce two important milestones: the creation of our Research Council and the launch of our Patient-Centered Research Strategy (SECURE Framework).
The Research Council
Formed in late 2024, the Research Council brings together people with Bloom syndrome, parents, clinicians, and researchers. This diverse group ensures that every step of our research is guided by the lived experiences of our community. Members serve staggered terms and work closely with the BSA Board of Directors to set priorities and advance projects that matter most.
The SECURE Framework
At the heart of the Council’s work is the SECURE Strategy, approved in 2025 after broad community input. It lays out our priorities:
- S – Safe: Safer care, treatments, and daily health decisions.
- E – Effective Treatments: Accelerating therapies and the search for a cure.
- C – Communicate & Collaborate: Strong partnerships across families, clinicians, and researchers.
- U – Understand: Deeper scientific knowledge through registries and studies.
- R – Recruit: Growing the global Bloom syndrome community of patients and experts.
- E – Engage: Ensuring patients and families are partners in every step of research.
Building the Future Together
The Research Council has already begun work on ambitious deliverables, including launching the International Bloom Syndrome Registry, initiating a natural history study, and establishing a Virtual Tumor Board to guide cancer care decisions.
A new two-year term will begin at the 2026 Blossoming Hope Patient & Family Conference, where the community will come together to establish the next set of deliverables and chart the path forward.
For too long, people with Bloom syndrome have faced fragmented healthcare, limited research, and unanswered questions about daily risks and long-term outcomes. By establishing the Research Council and adopting the SECURE strategy, the BSA is building the structure, accountability, and vision needed to change that.
This is a new era for Bloom syndrome research, driven by our community and focused on real impact.