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 with bleeding disorders / hemophilia.
Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.
The vision of Hemophilia Federation of America is that the bleeding disorders community has removed all barriers to both choice of treatment and quality of life.
HFA is, and its purpose shall be, for charitable, educational, and scientific purposes as allowed by state and federal law, including particularly, but not limited to, the following:
- Provide LEADERSHIP in monitoring, evaluating, and responding to the actions of government, the pharmaceutical and insurance industries, and health care providers.
- Champion the ongoing ETHICAL RESPONSIBILITY of community, government, the pharmaceutical and insurance industries, and health care providers.
- Improve AWARENESS AND EDUCATION of bleeding disorders and related medical conditions.
- PROMOTE AND ENSURE a safe blood supply and other therapies / treatments for bleeding disorders and other related medical conditions.
- Advance community and public DIALOGUE AND ACTION regarding the needs of people with bleeding disorders.
- Foster active COLLABORATION with other organizations that share similar goals.
- Deliver QUALITY PROGRAMS directly through its members.
*Lest We Forget
Funding Policy Preamble
On April 10, 2000, the Board of Directors voted to reverse The Hemophilia Federation of America’s long-standing policy refusing to accept donations from pharmaceutical companies involved in the manufacture of products to control hemophilia-induced bleeding. The Federation’s decision that now the time is right to accept support from the pharmaceutical industry requires both an explanation and words of caution.
During the late 1970s through the mid 1980s, much of America’s blood supply, particularly the stores of antihemophilic clotting factor, was contaminated with two deadly viruses: HIV and Hepatitis C. These viruses are devastating and continue to evoke a terrible calamity in our bleeding disorders community.
At first, both the pharmaceutical industry and certain government offices insisted that the adulteration of clotting factors was an unforeseen and unavoidable accident. Persistent questioning and investigation by our community and its supporters, including the effective efforts of the then newly formed Hemophilia Federation of America, strongly supports the position that appropriate diligence on the part of industry during those times would have substantially reduced, if not prevented, the incursion of these viruses into the medicines that otherwise promised our community a relatively normal, active and productive life.
Organizations professing to advocate on behalf of our community, along with leaders of the medical profession treating bleeding disorders, failed to aggressively and appropriately protect the health and safety of those whose care they had been entrusted. Many felt that this breach of duty resulted, in large part, because those persons and entities did not wish to challenge or provoke the industry that was their major source of funding. Much of our community believes that the failure of the pharmaceutical industry, certain government offices, advocacy groups and members of the medical profession to avert the HIV and Hepatitis C crisis resulted from complacency and disregard for the safety of our community.
As a result of these experiences, the Hemophilia Federation of America was established and takes great pride in its reputation for excellence, reliability and integrity regarding advocacy for our community without regard for any other concerns.
The Hemophilia Federation of America believes that, unlike the actions of the past, industry is now more committed to ensuring product safety. The Hemophilia Federation of America believes furthermore that mandatory government regulations, commissions and other forms of oversight have greatly reduced the chance of history repeating itself, especially since these measures recognize and include meaningful community input.
The Hemophilia Federation of America has chosen to accept industry funding without compromising the federation’s integrity, independence or its standing in our community. To those ends, the Hemophilia Federation of America has adopted the following policies, applicable to any and all donors regarding the acceptance of funds
The Hemophilia Federation of America solemnly pledges, now and forever, that it shall be mindful of history and this Preamble. The Hemophilia Federation of America shall enforce these policies strictly, diligently and without exception on behalf of all of our community who live with bleeding disorders and in memory of those of our community who have died.
*LEST WE FORGET!