Women and Girls with Bleeding Disorders
Women and girls can and do have bleeding disorders. Despite long-standing misconceptions about bleeding disorders in women, women’s voices and experiences are now being taken more seriously.
Women and girls with bleeding disorders have been overlooked. Too often, heavy bleeding is dismissed as “normal.” Now, women with bleeding disorders and providers in the community are speaking up – and changing how care is understood. Read some of the latest news and information about women and girls that have or may have a bleeding disorder.
Latest News and Information
Specialized Clinics for Women and Girls with Bleeding Disorders Are Improving Care (September 2026)
Many women spend years searching for answers. Clinics that bring hematology and gynecology together are helping close gaps with coordinated care. Read more.
What Meaningful Change Looks Like (September 2026)
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. Read more.
Do you think you may have a bleeding disorder? (September 2026)
If you have symptoms of a bleeding disorder, it is important to get a proper diagnosis and treatment from a specialist, called a hematologist. In the U.S., there is a network of hemophilia treatment centers (HTCs) that provide comprehensive care to patients with hemophilia and other bleeding disorders, and even some that have specialty services for women and girls. HANDI, our information resource center, can provide information on bleeding disorders and the nearest HTC. Find an HTC near you.
Other Factor Deficiencies (September 2026)
Women and girls can also have mild hemophilia. Women who carry the gene for hemophilia can have factor levels that are low, resulting in a diagnosis of mild hemophilia. Sometimes these women are referred to as “symptomatic carriers.” There are many rare factor disorders (link), including factor I, II, VI, VII, XI and XIII deficiency that affect men and women equally. Learn more.
Avoid Undiagnosed and Untreated Bleeding Disorders (September 2026)
Although men and women with bleeding disorders have similar symptoms, such as bleeds into joints and tissues, women can experience added complications during menstruation, pregnancy, labor and delivery. Some doctors are not familiar with bleeding disorders in women, resulting in many of women going undiagnosed or misdiagnosed. Women with undiagnosed and untreated bleeding disorders risk serious complications. Learn about NBDF’s Victory for Women website, which has information and resources specific to women and girls. Learn more.
Learn what genetic counseling is; who may benefit from genetic counseling; how genetic counseling and genetic testing are related; what genetic counseling can tell you; if being a “carrier” means you won’t have bleeding disorder symptoms; who should get genetic testing; when genetic testing should happen; as well as barriers and other considerations. Learn more.
Heavy Periods: What Can Help (September 2026)
Keeping track of bleeding patterns can help providers recognize warning signs sooner. Also, knowing the red flags; assembling the right care team; exploring treatment options; and not minimizing your symptoms. Learn more.
Bleeding Disorder Symptoms Across Stages of Life (September 2026)
Bleeding disorders can affect women and girls differently at different stages of life. Symptoms may appear during childhood, intensify with menstruation or pregnancy, or become more noticeable during surgeries and other medical procedures. Recognizing warning signs early — and continuing care across the lifespan — can help improve quality of life and reduce serious complications. Learn more.
The Toll of Heavy Bleeding (September 2026)
Heavy bleeding can disrupt nearly every aspect of daily life. People describe missing school and work, carrying extra clothes and menstrual products everyone they go, and avoiding activities out of worry about flooding through clothing in public. Others experience fatigue and inability to concentrate from anemia. Read more.
The Problem with Women As “Just Carriers” for Bleeding Disorders (September 2026)
Classic medical teaching around hemophilia focused on X-linked inheritance: Males were affected, while females were carriers. But providers say that framework oversimplified the reality. Read more.
Period Tracking Apps and Privacy: What You Should Know (April 2026)
Menstruation tracking is a valuable tool for women with bleeding disorders, but experts say you need to be vigilant about what information you share. Read more.
Stroke Prevention for Women with Bleeding Disorders (September 2025)
Learn how hormonal treatments and inherited risks raise the stakes — and what to do about it. Read more
Focus on Females (September 2025)
While von Willebrand Disease can appear in both men and women equally, the symptoms affect females more by far. A Guide to Living with von Willebrand Disease is the world’s first book on VWD, updated in 2021’s fourth edition. Written with co-author Paul Clement, topics include learning to cope with VWD, inheritance, the medical system, treatment, women’s issues, health insurance. Complete resource guide and real-life stories. Free to patients and families. Order here.
Provider Webinar Focuses on Bone and Mental Health for Women (August 2025)
Women with bleeding disorders need to be screened for anxiety/depression and bone health. A new webinar for healthcare providers discusses case studies and presentations on this important topic. Read more.
Breaking Barriers in Bleeding & Thrombotic Disorders in Women (June 2025)
The 2025 Research Journal Club brings together experienced researchers, new research fellows, and lived experience experts to explore critical topics in bleeding and thrombotic disorders. This session focused on the latest research on bleeding and clotting disorders in women, shedding light on diagnosis, treatment, and the unique challenges women face. Read more.
Women and Girls Bleed Too (April 2025)
This year’s World Hemophilia Day, which was held April 17, focused on “Access for All: Women and Girls Bleed Too” — tackling the underdiagnosis and inadequate treatment of women with bleeding disorders. NBDF’s Dawn Rotellini shares why this focus is so critical for advancing equitable care, and why it is applicable year-round. Read more.
HANDI Highlights Resources for Historically Underserved Population (October 2024)
October HANDI Highlights is dedicated to an historically underserved group within the inherited bleeding disorders community – women, girls, and people with the propensity to menstruate (WGPPM). Read more.
Learn About Clinical Issues in Women with Bleeding Disorders (June 2024)
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a series of educational videos on clinical issues in women, girls, and people with the propensity to menstruate (WGPPM). They were created for physicians, physician assistants, nurse practitioners, and other clinicians who treat patients with bleeding disorders, including von Willebrand disease (VWD), hemophilia A or hemophilia B. We are sharing this information for those individuals who may have missed our earlier announcement. Read more.
Yale Researchers Explore the Possibilities of von Willebrand Factor (January 2024)
Researchers at the Yale School of Medicine have been studying the key clotting protein von Willebrand factor (VWF), to shed light on the processes by which it is stored and released in response to an injury. As VWF is the deficient protein in many cases von Willebrand disease (VWD), a better understanding of it could ultimately lead to enhanced clinical outcomes for patients. Read more.
Women with Bleeding Disorders and Other Medical Concerns (December 2023)
Women who have von Willebrand disease or hemophilia are not at risk for other female medical problems, but two common disorders in women, polycystic ovary syndrome and endometriosis, can cause additional concerns and pain, and need proper diagnosis and treatment. An excellent article in HemAware covers this interesting and vital topic. Read here.
Concerns for Women with Polycystic Ovary Syndrome and Endometriosis (December 2023)
Women with bleeding disorders and other medical concerns, or who have von Willebrand disease or hemophilia, are not necessarily at risk for other female medical problems. But two common disorders in women, polycystic ovary syndrome and endometriosis, can cause additional concerns and pain, and need proper diagnosis and treatment. An excellent article in HemAware covers this interesting and vital topic. Read more.
Gynecologists Have a Significant Part to Play in Shrinking Diagnostic Gaps (September 2023)
A new commentary, “Closing the Diagnostic Gap in Adolescents and Young Adult Women with Bleeding Disorders,” published in the August issue of the journal Obstetrics & Gynecology is a call to maximize the role of gynecologists to achieve early diagnoses in this underserved population. Read more.
Learn about the symptoms of a bleeding disorder, specifically for women and girls, including vonWillebrand (VWD). Conditions causing minor bleeding may require no treatment. However, preventing or treating more severe bleeding problems, such as heavy periods or excessive bleeding during dental or surgical procedures, requires the use of medications. Healthcare providers, who are experts in treating bleeding disorders, can help find the best treatment and management options for you. Learn about symptoms.
Additional information:
Learn more about women and girls with bleeding disorders
Learn more about factor deficiencies
Explore NBDF’s Victory for Women program
To find your nearest HTC or the contact info for a hematologist specializing in bleeding disorders, you can search the CDC Hemophilia Treatment Center Directory.