Hemophilia Federation of America, Inc. (HFA) is a patient education, patient services and advocacy organization serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community.
In the 1980s, approximately 90% of people with severe hemophilia were infected with the HIV virus, and almost all patients with hemophilia who used factor products before 1988 were infected with Hepatitis C (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 lives and brought to the forefront the need to change the manufacturing and screening processes.
From this devastation, HFA was born and created a voice for the patient community. HFA is a non-profit 501(c)(3) organization incorporated in 1994. HFA serves as a community-based organization, committed to championing the needs of families living with chronic, often painful, and debilitating bleeding disorders. We advocate for safe, affordable, and obtainable therapies and health coverage. Ultimately, we seek a better quality of life for all persons with bleeding disorders.
Based in Washington, D.C., HFA works in conjunction with other national and state organizations on behalf of families living with bleeding disorders. Its officers and staff to maintain a highly visible presence, representing the bleeding disorders community on Capitol Hill and speaking regularly before the Food and Drug Administration, Centers for Disease Control and Prevention, and other key agencies. HFA is committed to community education and provides tools and resources to give the community a voice at state and federal legislatures.
HFA consists of a national organization office and 43 state and local community-based affiliated organizations made up of numerous men, women, children, moms, dads, siblings, grandparents and friends impacted by a bleeding disorder. Additionally, HFA works with many non-affected individuals and organizations, such as healthcare providers, therapy providers, specialty pharmacies, donors, and insurers that play a significant role in the community.
HFA member organizations across the country utilize HFA’s collaborative federation to strengthen community support and awareness, develop effective local organizations, and implement valuable community-based programs. These programs include a wide range of adult outreach initiatives, as well as broad-based support for families living with hemophilia, von Willebrand disease and other bleeding disorders.