What Meaningful Change Looks Like

Improving care for women and girls with bleeding disorders requires changes at multiple levels.

It includes earlier recognition of heavy menstrual bleeding as a potential bleeding disorder symptom, better provider education, expanded access to multidisciplinary care, and continued research focused on women’s experiences across the lifespan.

In 2025, the National Bleeding Disorders Foundation (NBDF) held a research roundtable focused on women and girls with bleeding disorders. The event brought together lived-experience experts, researchers, health care providers, and industry leaders for an open conversation about the barriers women and girls face in bleeding disorders research. They discussed the ways that clinical-trial design for treatments for bleeding disorders can exclude women, ignore the way that women bleed, and fail to capture how women’s bleeding symptoms affect their quality of life. The results of the roundtable, including recommendations to address these issues and next steps, have been submitted to a peer-reviewed journal and will be published in fall 2026 on NBDF’s website.

Advocacy is also playing a role. Through NBDF and other organizations, people are speaking publicly, participating in awareness campaigns, and working with lawmakers to improve diagnosis and treatment pathways.

For many advocates, progress begins with conversation. Reducing stigma around periods, inviting people to seek answers earlier, and helping people feel believed may ultimately change outcomes for future generations.

Through her advocacy efforts, Krista Pennington has been able to channel grief and loss from her harrowing journey to diagnosis into something meaningful and good, and she encourages others to do the same.

“Nothing is going to change,” she says, “unless people are making their stories known.”

Source: National Bleeding Disorders Foundation, HemAware, September 2026