The Hemophilia Foundation of Michigan (HFM) was founded in 1956 and began as an all-volunteer chapter of the National Hemophilia Foundation, serving patients and families across the state of Michigan. In 2026, HFM will celebrate 70 years of service to the bleeding disorders community.
In 1969, HFM received statewide United Way support that allowed significant organizational growth, including hiring an executive director. That same year, HFM initiated the first-ever residential summer camping program (in the world!) for children with hemophilia, known as Camp Bold Eagle Highlands. HFM’s camping programs have grown exponentially since our beginning. In 2025, HFM’s Eagle Journey camp programs include multiple specialized programs offering several weeks of programming each summer, including campers ages 6 through adulthood. They also provide a camp alumni retreat and follow-up teen retreat programs each fall and spring.
In the mid-1970s, Congress authorized and funded a national network of Hemophilia Treatment Centers (HTCs) mainly due to the efforts of hematologist Dr. John Penner. Dr. Penner, who also led HFM’s effort to begin a summer camp program, was initially affiliated with the University of Michigan’s medical center, later with Michigan State University.
In 1980, HFM worked with state legislators to extend healthcare coverage provided by what is now known as Michigan’s Children’s Special Healthcare Services (CSHCS) to adults and children living with bleeding disorders. In the next couple of years, the CDC reported the first HIV/AIDS cases in our population via tainted blood products used to treat people with hemophilia. At this time, HFM expanded community support services to our community, shared information regarding product issues as soon as it was available, expanded education and support for HTC staff, and provided education to the general public and legislators. The heartbreak and devastation of AIDS will forever impact our community’s history.
In 1984, HFM was appointed the federal Regional Core Center, known as the Great Lakes Region, to support HTCs in Michigan, Ohio, and Indiana. Ten years later, the Cascade Hemophilia Consortium was founded as a non-profit subsidiary of HFM. In the early 1990s, Congress enacted Section 340B of the Public Health Service Act, requiring pharmaceutical manufacturers to provide discounted outpatient products to ‘covered entities’ to stretch federal resources for institutions serving vulnerable populations.
HFM is currently governed by a volunteer Board of Directors that collaborates with the foundation’s staff leadership. Susan Fenters Lerch serves as the Great Lakes Region HTC Network regional director and the HFM executive director.
HFM offers many educational and advocacy programming activities for individuals, families, and loved ones affected by bleeding disorders. In 2018, HFM initiated a national annual conference for women with hemophilia and other rare factor deficiencies. It has been recognized nationally and internationally as a fantastic opportunity for women to learn and advocate for their care.
HFM values partnerships with HFA and other national bleeding disorder organizations to share perspectives and opportunities.
With concerns surrounding the continued availability of support for care and services to the bleeding disorders community across the nation, HFM is committed to working hand-in-hand with HFA and other bleeding disorder organizations to ensure they maintain the many strides our community has experienced in medical care and services.
HFM provides outreach to more than 4.000 households across Michigan and works directly with 19 treatment centers and several outreach programs across the Great Lakes Region. To learn more about HFM’s services and various programs available to the bleeding disorders community, please visit www.hfmich.org
HFM’s 2025 National Conference for Women with Hemophilia and Rare Factor Deficiencies will occur October 3rd through 5th at the Westin Detroit Airport. Registration will open this summer.
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