NBDF’s inaugural Research Roundtable was held in Washington, D.C. on October 15-16, 2025. The meeting brought together lived experience experts (LEEs), researchers, healthcare providers, and industry leaders in a pre-competitive, product-agnostic setting to address barriers faced by women, girls, and people with the potential to menstruate in bleeding disorders research. Although the FDA could not attend due to the government shutdown, NBDF engaged with them on key agenda topics beforehand and plans to resume the dialog with them further once the government reopens.
Focus on Women, Girls, and Menstruating Individuals in Clinical Trials
The 2025 Research Roundtable focused on the participation of women, girls, people with the potential to menstruate in clinical trials for conditions such as hemophilia, von Willebrand disease (VWD) and Glanzmann thrombasthenia. The goals of the conference included identifying barriers to participation in research, developing strategies to overcome these barriers, identifying best practices, and defining actionable steps and measurable outcomes to improve clinical trial design and participation.
Historically, women and girls and menstruating individuals have been excluded from medical research overall, and that includes research into bleeding disorders. This gap in understanding has led to these same people being underdiagnosed and undertreated. In some cases, it can impede their access to safe and effective treatment plan, because the indications for medication are based on male-focused studies. Increasing inclusion of these groups in research is essential to ensure equitable care and improve health outcomes for all individuals affected by bleeding disorders.
Centering Lived Experience in Bleeding Disorders Research
The Research Roundtable is a part of NBDF’s Bleeding Disorders Research Collaborative (BDRC)—an initiative advancing equitable, patient-centered research. NBDF believes that people who live with bleeding disorders and their support network provide unique insights into the daily challenges and practicalities of living with a bleeding disorder, and their participation leads to more relevant and impactful research. Guided by principles to improve health outcomes, the BDRC ensures lived experience experts are involved in all aspects of research—from identifying barriers to shaping trial design—so studies reflect the lived experiences of those affected the most.
Next Steps
NBDF will share highlights, next steps, and plans for ongoing engagement with the FDA and other partners to strengthen the inclusion of women, girls, and people with the potential to menstruate in clinical trials.
