Organization History

The foundation hosts an inaugural summit focused on supporting the female and female-identifying population in Atlanta.

In 2017, the foundation introduced the Guías Culturales program. Guías culturales, or cultural guides, are volunteers within the community who speak Spanish and have navigated care for themselves or family members.

In partnership with Mt. Sinai hospital, the foundation publishes clinical findings on oral surgery and dental care in a manual series called Treatment on Hemophilia.

NHF’s Medical and Scientific Advisory Council (MASAC) issued a standards-of-care recommendation in 2008 to assist pharmacies providing clotting factor concentrates for home use to patients with bleeding disorders.

Dr. James F. Garrett, director of federal research into vocational rehabilitation at the U.S. Department of Health, Education and Welfare, receives NHF's first-ever Humanitarian Award.

A 1968 Miami newspaper denotes Timmy Strohbach as "the first poster boy" of NHF.

NHF partners with McMaster University to create guidelines for hemophilia management care models.

Physician-researchers conduct a survey on behalf of NHF's Medical and Scientific Advisory Council to gauge current practices regarding newborn intracranial hemorrhage and obstetrical care and mode of delivery of pregnant hemophilia carriers. The survey queried obstetricians, neonatologists, and hematologists in the United States.

Over the course of 18 months, NHF worked with chapters throughout the U.S. to learn more about the nature and needs of adolescents with hemophilia. Results were presented at the 1968 meeting of the World Federation of Hemophilia in Montreal, and were also published in the December 1969 of Vocational Guidance Quarterly.

At the 1965 meeting of the World Federation of Hemophilia in Paris, Dr. Martin Rosenthal, NHF's medical advisor, presents on the importance and responsibility of his role and that of the Medical Advisory Council of NHF.

On November 8, 2004, Ann-Marie Nazzaro, PhD and Lauren Daitch, MPH, presented novel VWD findings from an NHF and CDC designed study via Project Red Flag about women's knowledge of VWD. The presentation occurred at a meeting of the American Public Health Association.

NHF partners with the AIDS Memorial Grove and the Hemophilia Federation of America to open a Hemophilia Memorial Circle in Golden Gate Park.

Donald Goldman, Esq., an attorney, who was active in the National Hemophilia Foundation and its chapters for over 25 years joins the National Commission on AIDS among other advocates and medical experts. He coordinated the National Hemophilia Foundation's efforts to improve the safety of the nation's blood supply, began many of its efforts in HIV risk reduction, and introduced initiatives to improve delivery of hemophilia and HIV services to minorities.

On December 2, 1986, NHF executive director Alan Brownstein penned a letter to Surgeon General C. Everett Koop in response to the first Surgeon General's Report on AIDS. Brownstein noted that the report would help "dispel ignorance and prevent discrimination" while also educating and informing.

NHF hosts its 66th annual Bleeding Disorders Conference.

NHF hosts a Steps for Success event titled, "Hemophilia Pharmacy Management: Steps for Success With Managed Care and Specialty Pharmacy" that was designed to meet the educational needs of specialty pharmacists, home health pharmacists, health plan pharmacists, managed Medicaid pharmacists, medical directors, and other health care professionals with an interest in the management of patients with hemophilia.

On January 17, 1983, NHF issued a statement calling on manufacturers of blood products to refuse blood donations by Gay men.

A 10-year study on joint damage run by NHF medical trustee Henry H. Jordan concludes. A few years later, Henry would publish a monograph on his findings involving 56 hemophilia patients.

In 1946, Dr. Henry Jordan, a surgeon and medical trustee of NHF, began a program for the orthopedic treatment of hemophilia patients. The study was funded and conducted in cooperation with NHF, and was run out of Lenox Hill Hospital in New York City. The study included 110 patients and ran through 1956.

Dr. Henry Jordan, a trustee of the medical advisory council of the National Hemophilia Foundation, publishes a well-received book on treatments for hemophilic arthropathy (joint damage). The research cases featured in the book were funded by NHF.

Lee, the son of NHF's founders, was born in 1941* but was not diagnosed with hemophilia until he experienced an abdominal bleed 14 months later. *NOTE: Some public records indicate Lee's birth year as "about 1942" despite NHF's official record memos having his birth year listed as 1941.

Dr. Henry H. Jordan, an orthopedic surgeon who was a pioneer in the orthopedic treatment of hemophiliacs passed his way. Throughout his career, much of his work was funded by NHF.

The first-ever recipients of the Jeanne Marie Lusher Fellowship are announced.

NHF hosts virtual State of the Science Research Summit to help shape the National Research Blueprint

NHF launches Research Journal Club to bring researchers and community members together to discuss the latest science and innovative breakthroughs

NHF refocuses its mission statement to reflect a renewed emphasis on research and an expanded scope to include inheritable blood disorders.

NHF hosts a launch party for Super Seven, its new children’s book for kids with rare bleeding disorders.

NHF announces that its newest fellowship, named in honor of Jeanne Marie Lusher, will prioritize diverse researchers.

NHF enters another five-year cooperative agreement with the CDC to provide educational programming.

MyBDC -- NHF's patient dashboard -- rebrands to Community Voices in Research (CVR).

The NHF and CDC conducted a survey, completed in March 2000, aimed at ascertaining knowledge about, attitudes toward, and behaviors associated with key prevention activities among people with hemophilia.

In 2000, NHF launched Project Red Flag with program partners from the the Centers for Disease Control and Prevention. The national campaign had the aptly phrased tagline, “real talk about women’s bleeding disorders."

NHF launches a Career Development Award to support and fund researchers.

From September 1999 through February 2000, NHF and CDC conducted a national baseline telephone survey to assess prevention knowledge and health practices in the hemophilia community to inform development of an effective national prevention program. Survey results and knowledge in the field were used to identify priority messages for NHF’s National Prevention Program (NPP). The NPP is a public awareness campaign targeting people affected by bleeding disorders, their families, and health care providers. The NPP’s theme is “Do the 5!,” which includes the following five strategies for living a longer and healthier life:

Get an annual comprehensive checkup at a hemophilia treatment center.
Get vaccinated—hepatitis A and B are preventable.
Treat bleeds early and adequately.
Exercise and maintain a healthy weight to protect your joints.
Get tested regularly for bloodborne infections.

NHF elects its first female board president, Katherine Muir.

NHF launches the "It's Time for a Cure!" campaign.

NHF forms a "Women with Bleeding Disorders Task Force" for the first time.

NHF's magazine, HemAware, debuts its inaugural issue.

In 1996, the National Hemophilia Foundation initiated an annual Gene Therapy and Novel Technologies Workshop to bring together immunologists, clinicians, and researchers in gene therapy. Over two decades later, the Gene Therapy Workshop still continues today.

MASAC issues recommendations for prophylaxis treatment for individuals with r factor VIII or r factor IX.

Dr. Jeanne Lusher becomes the first female chair of MASAC.

The camp subcommittee of NHF's Nursing Executive Committee develops the first Hemophilia Camp Program Standards.

NHF enters a co-op agreement with the CDC to provide education, resources, and programming.

Dr. Glenn Pierce, a physician with hemophilia, runs for NHF president on a platform of reforming the organization to meet the community’s demands. Pierce appointed Val Bias, a MANN leader, as chairman of the board once elected.

NHF launches the Women’s Outreach Network of NHF (WONN) and the Men’s Advocacy Network of NHF (MANN).

Robert Lee Henry, NHF's founder, passes away.

NHF is accredited by the Combined Federal Campaign.

George King was elected president of NHF.

NHF launches the Judith Graham Pool Research Fellowship.

NHF launches the Lee Henry Ferguson Scholarship, a financial aid award for students, which goes on until 1982.

Hemophilia of Michigan opens Camp Bold Eagle, the first summer camp to serve the bleeding disorders community in the U.S.

NHF's first medical director, Dr. Martin Rosenthal, passes away suddenly from a heart attack.

First NHF Award of Excellence is given.

John Walsh replaces Coring Jr. as the NHF executive director.

NHF hosts another symposium; MASAC again presents its findings and publishes a paper.

Lee Henry Ferguson passes away due to complications from hemophilia.

NHF hosts another symposium; MASAC presents its findings and publishes a paper.

Howard Coring Jr. is hired as the first official executive director of NHF.

Dr. Martin Rosenthal is named NHF's first medical director.

NHF hosts its first symposium where MASAC presents its findings.

At a board meeting in Chicago, NHF hands over business functions from volunteers to official staff, an effort lead by board secretary Margaret Hexter, who lived in Illinois and had a son with hemophilia.

On February 21, 1956, a "Certificate of Change of Name of The Hemophilia Foundation, Inc., to "The National Hemophilia Foundation" is filed in the New York Department of State.

Dr. Kenneth Brinkhous is named as the first president of MASAC.

The first meeting of NHF's Medical and Scientific Advisory Committee (MASAC) is held.

NHF is deemed a charitable organization by the U.S. Internal Revenue Service.

While on a subway train in NYC, Robert Lee Henry reads an article that inspires him to form NHF.