In May 2023, in Atlanta, GA, a group of stakeholders gathered to discuss and provide solutions for women, girls, and people who had or have the potential to menstruate with bleeding disorders.

Presented at ASH in San Diego 2023. Dr. Danielle Nance of FTFW was an author. It argues for prophylaxis for women with ABRs of 2 or more.

Women and girls affected by haemophilia (WGH) are at an increased risk of bleeding. Furthermore, lack of recognition and misidentification is an ongoing issue.

This is the National Bleeding Disorder Foundation’s website dedicated to educating women on bleeding disorders. There are a variety of videos, documents, and other information on how to care for women with bleeding disorders.

Annual report with excellent worldwide data. Page 45 contains interesting and compelling data on bleeding among women.

From abstract: In 2004, 766 questionnaires were sent, and 546 women responded (80%). Of these, 274 were carriers of hemophilia A or B. The median clotting factor level of carriers was 0.60 IU/mL (range, 0.05-2.19 IU/mL) compared with 1.02 IU/mL (range, 0.45-3.28 IU/mL) in noncarriers. Clotting factor levels from 0.60 to 0.05 IU/mL were increasingly associated with prolonged bleeding from small wounds and prolonged bleeding after tooth extraction, tonsillectomy, and operations. Carriers of hemophilia bleed more than other women, especially after medical interventions. Our findings suggest that not only clotting factor levels at the extreme of the distribution, resembling mild hemophilia, but also mildly reduced clotting factor levels between 0.41 and 0.60 IU/mL are associated with bleeding. (Blood. 2006;108:52-56)

The findings of the B-HERO-S study reveal potential unmet needs of some patients with mild-moderate hemophilia B, and the results may be leveraged to inform patient outreach by hemophilia treatment centers and education initiatives.