The Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act would expand research, provider education, and awareness of bleeding disorders in women and girls through coordinated federal action.

NEW YORK, May 26, 2026 /PRNewswire/ — Last week, Representatives Julie Johnson (D-TX-32), Joe Wilson (R-SC-02), and Sarah McBride (D-DE-At Large) introduced the Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act (FED UP with Bleeding Disorders Act, H.R. 8794), federal legislation aimed at improving diagnosis, treatment, and research equity for women and girls with bleeding disorders. The bill is a key advocacy priority of the National Bleeding Disorders Foundation (NBDF).

Women and Girls Face Delayed Diagnosis

Bleeding disorders have long been associated with men by both medical professionals and the public. Women and girls with conditions such as von Willebrand disease, the most common bleeding disorder, and hemophilia face delayed diagnosis and gaps in care. Symptoms, including heavy menstrual bleeding, are often overlooked or normalized, rather than evaluated as a potential sign of an underlying condition.

NBDF and advocates have worked to address this misconception and improve awareness of bleeding disorders in women and girls.

The FED UP Act calls for a federal review of programs related to bleeding disorders in women and girls. It focuses on research, provider education, access to care, and inclusion in clinical trials, and directs the development of a national public awareness campaign.

Momentum for the legislation has been supported by engagement between advocates and policymakers in the U.S. Congress. In April 2025, NBDF convened a Capitol Hill Day focused on women and girls with bleeding disorders, followed by continued advocacy during Washington Days 2026.

“This legislation represents meaningful progress toward breaking down barriers and ensuring future generations receive the care and recognition they deserve,” said Dawn Rotellini, chief operating officer of NBDF.

About The National Bleeding Disorders Foundation (NBDF)

The National Bleeding Disorders Foundation (NBDF) is dedicated to finding cures for inherited blood and bleeding disorders and addressing and preventing these disorders’ complications through research, education, and advocacy, enabling people and families to thrive. NBDF serves people across the United States with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. Formerly the National Hemophilia Foundation (NHF), NBDF has changed its name and domain from hemophilia.org to bleeding.org.

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SOURCE National Bleeding Disorders Foundation