On May 22nd, Representatives Julie Johnson (D-TX-32), Joe Wilson (R-SC-02), and Rep. 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 introduced in the United States Congress aimed at improving diagnosis, treatment, and research equity. The bill is a key advocacy priority of the National Bleeding Disorders Foundation (NBDF).
Women and Girls Face Delayed Diagnosis of Bleeding Disorders
For decades, bleeding disorders—particularly hemophilia—have been commonly associated with men by both medical professionals and the general public. At the same time, women and girls with bleeding disorders ranging from hemophilia to von Willebrand disease (the most common inherited bleeding disorder), have faced a different but significant challenge: their symptoms are frequently overlooked or misattributed. Heavy menstrual bleeding, one of the most common symptoms of bleeding disorders in women, is often normalized or not recognized as a sign of an underlying condition, which can contribute to delayed diagnosis and gaps in care.
“I was 27 years old when I was diagnosed with von Willebrand disease, after years of symptoms and inadequate care,” said Candi Mitchum, Vice President of the Bleeding Disorders Association of South Carolina, who is a constituent of Representative Wilson and who advocated for the legislation at Washington Days. “No one should have to wait that long for answers.”
The National Bleeding Disorders Foundation and advocates across the bleeding disorders community have worked to address this longstanding misconception, raising awareness of the unique ways bleeding disorders present in women and girls and promoting earlier diagnosis and improved access to care.
“NBDF and the bleeding disorders community have worked tirelessly to bring visibility to the unique challenges faced by women and girls,” said Dawn Rotellini, chief operating officer of the National Bleeding Disorders Foundation. “For far too long, women and girls have been blocked from timely diagnosis, comprehensive care, and inclusion in clinical research.”
FED UP Act Targets Research, Treatment, and Awareness Gaps
The Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act reflects these sustained advocacy efforts. The legislation calls for a coordinated, interagency review across federal health programs and agencies to evaluate and update programs, activities, and strategic plans related to women and girls with bleeding disorders. Key focus areas include scientific research, access to care, provider training and education, and inclusion in clinical trials. The bill also requires the development of a national public education and awareness campaign aimed at improving recognition, diagnosis, and treatment among both patients and healthcare providers.
Momentum for this legislation has been supported by ongoing engagement between the bleeding disorders community and policymakers in the United States Congress. In April 2025, the National Bleeding Disorders Foundation convened a Capitol Hill Day dedicated to women and girls with bleeding disorders, bringing advocates to Washington to share their experiences and outline urgent needs. Building on that effort, community members continued their advocacy during Washington Days 2026, educating Congressional offices and urging action on this issue.
“This legislation represents meaningful progress toward breaking down those barriers and ensuring future generations receive the care and recognition they deserve,” said Rotellini.
“Thank you to Representative Julie Johnson for introducing the FED UP with Bleeding Disorders Act,” said Julie Fredericksen Jones, Executive Director of Texas Central Bleeding Disorders. “This legislation is the result of years of advocacy from a community that has too often been overlooked. We look forward to continuing to work alongside the United States Congress to advance this important effort.”
You can read the full text of the FED UP Act here.
