The National Bleeding Disorders Foundation’s (NBDF) National Research Blueprint (NRB), launched in 2020, has a new name: the Bleeding Disorders Research Collaborative.
An article published in Blood Vessels, Thrombosis & Hemostasis, a journal published by the American Society of Hematology, summarizes progress to date and previews more detailed manuscripts coming later this year. The update reflects how far the initiative has come—and where it's headed.
This change, shaped by community input, marks more than a rebrand. It represents a shift from defining research priorities to implementing them through inclusive and equitable approaches. Most importantly, it reinforces NBDF’s commitment to partnering with those most affected by inheritable bleeding disorders: lived experience experts (LEEs)—individuals and families with firsthand experience.
The NRB was launched as a multi-phase initiative to identify critical research priorities and build a more responsive and representative research infrastructure. By 2022, the NRB had defined and ranked research priorities, publishing them in a detailed supplement in 2023.
Now, the initiative enters a new phase. As the Bleeding Disorders Research Collaborative, it moves from planning to execution, translating priorities into real-world studies and strategies to improve care, equity, and quality of life across the bleeding disorders community.
“The Bleeding Disorders Research Collaborative reflects a powerful shift in how research is done,” said Maria Santaella, PhD(c), MSN, RN-BC, CPHON, vice president of research strategy at NBDF. “LEEs are no longer just participants—they are partners, co-creators, and experts. This new name recognizes their role in shaping a future built with the community, not just for the community.”
LEEs will help design studies, support recruitment, and ensure findings are communicated in accessible and meaningful ways. “Through the Bleeding Disorders Research Collaborative, researchers and LEEs collaborate as equal partners at every step, from study design to sharing results,” added Santaella.
This progress would not be possible without the invaluable contributions of the community. Their insights, trust, and collaboration have shaped this work, and continue to guide its future.
Learn more about the Bleeding Disorders Research Collaborative here. More information on NBDF’s lived experience experts (LEEs) can be found here.
