Hemophilia Federation of America

OUR STORY We are a patient advocacy organization serving the rare bleeding disorders community. The Beginning In the 1980s, approximately 90% of patients with severe hemophilia were infected with HIV, and almost all patients with hemophilia, who used factor products before 1988, were infected with hepatitis C virus (HCV). Blood-borne infections were a major complication of treatment for people living with hemophilia. At the time, factor products were manufactured using large plasma donor pools, and the process lacked specific tests for infectious agents. This tragedy resulted in the loss of many thousands of lives and the need to change the manufacturing and screening processes. In 1994, Hemophilia Federation of America (HFA) was incorporated and began working as a voice and advocate for the bleeding disorders patient and caregiver community. Who we serve We are a community-based, patient-centered organization and are committed to championing the needs of families living with debilitating bleeding disorders. We advocate for safe and effective therapies and quality, affordable health coverage. Ultimately, we seek a better quality of life for all persons with bleeding disorders. What we do We work in conjunction with other national and state organizations on behalf of families living with bleeding disorders. Our officers and staff maintain a highly visible presence on Capitol Hill and speak regularly before the Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), and other key agencies. We are committed to community education and provide tools and resources for patients to find local and financial assistance for their care. HFA is headquartered in Washington, D.C., and partners with over 50 state and local community-based affiliated organizations made up of men, women, children, moms, dads, siblings, grandparents and friends impacted by a bleeding disorder. Additionally, we work with healthcare providers, therapy providers, specialty pharmacies, donors, and insurers, who play a significant role in patients’ and caregivers’ lives.