Established in 1948, the National Hemophilia Foundation has long been one of the nation’s leading organizations dedicated to serving patients and families living with inheritable blood and bleeding disorders such as hemophilia, von Willebrand disease, ultra-rare platelet disorders, and more.

In celebration of this momentous milestone, NHF will have a variety of celebratory events, content, and programming throughout the year as part of “The Red Thread” which will tie together the organization’s history and achievements throughout the years.

Activities include regional celebrations, interactive social media – including a regular Tuesday Trivia series on Instagram – history-themed webinars, legislative lookbacks, and more. Most notably, an interactive timeline at hemophilia.org/75 will allow community members to explore the various intersections of NHF’s most important moments. Throughout the anniversary year, NHF will also shine a light on the important work and legacy of its expansive nationwide network of over 50 chapters.

Historical Timeline

Discover the story of NHF alongside major medical advances throughout the seven and a half decades. Learn more about the organization’s origins starting in 1948, to its modern day legacy. The historical timeline below can be explored on a desktop or mobile browser.

To request sources for individual facts, email communications@hemophilia.org

Celebrating 75 Years

1940s

YYYY
1941
1941 | Jan
1941 | Jan 01
Lee Henry Born

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.

No
NHF History
YYYY
1946
1946 | Jan
1946 | Jan 01
Orthopedic Study

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.

No
Medical History
YYYY
1946
1946 | Dec
1946 | Dec 31
Plasma Fractionation
Plasma Fractionation

Edwin Cohn from Harvard University develops “plasma fractionation” in order to prepare products such as albumin and IgG for the blood volume expander. Nowadays, most of the modern human plasma fractionation industries are based on Cohn’s method.

Yes
Medical History
YYYY
1946
1946 | Dec
1946 | Dec 31
Inspiration Strikes

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

No
NHF History
YYYY
1947
1947 | Dec
1947 | Dec 31
Hemophilia A and B Differentiation
Hemophilia A and B Differentiation

In 1947, Dr. Alfredo Pavlovsky, a doctor in Buenos Aires, Argentina, distinguished two types of hemophilia in his lab: A and B.

Yes
Medical History
YYYY-MM-DD
1948
1948 | Apr
1948 | Apr 07
WHO Forms

On April 7, 1948, 61 nations attended the first World Health Assembly and signed the constitution of the World Health Organization.

No
Medical History
YYYY-MM-DD
1948
1948 | Jun
1948 | Jun 15
Official Incorporation
Official Incorporation

On June 15, 1948, Robert Lee Henry files a Certificate of Incorporation with the State of New York Department of State for the Hemophilia Foundation.

No
NHF History
YYYY-MM-DD
1949
1949 | Mar
1949 | Mar 29
Canine Hemophilia
Canine Hemophilia

The discovery of canine hemophilia, which allowed for controlled experimentation, led to great strides in both genetic and biochemical research toward the treatment and cure of hemophilia.

Yes
Medical History
YYYY
1949
1949 | Dec
1949 | Dec 31
IRS Recognition
Official Incorporation

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

No
NHF History

1950s

YYYY-MM-DD
1950
1950 | Apr
1950 | Apr 01
The Passing of Dr. Charles Drew
The Passing of Dr. Charles Drew

Dr. Charles Drew, an innovator in modern blood transfusions and a leader in inspiring health equity efforts for African American patients and physicians, passes away suddenly in a car crash.

Yes
Medical History
YYYY
1950
1950 | Dec
1950 | Dec 31
Medical Technology
Medical Technology

Development of the plastic bag revolutionizes blood collection.

Yes
Medical History
YYYY
1951
1951 | Dec
1951 | Dec 31
Henry Family Article
Henry Family Article

The Henry family is featured in an article in McCall's magazine, drawing attention to their experience with hemophilia and that of other families.

No
Media Appearances
YYYY-MM-DD
1952
1952 | Dec
1952 | Dec 27
Christmas Disease

Hemophilia B is first referred to as "Christmas Disease" in a 1952 edition of the British Medical Journal. The condition was dubbed with the name not for the article's publication during the holiday season, but after it focused on a then five-year-old boy named Stephen Christmas.

No
Medical History
YYYY
1953
1953 | Dec
1953 | Dec 31
New Chapters
New Chapters

Chapters form in Rochester and Chicago.

No
NHF Chapters
YYYY
1954
1954 | Jan
1954 | Jan 01
Roman Numerals

The International Committee for the Nomenclature of Blood Clotting Factors was established with one of its primary objectives the development of a common scientific terminology. The committee consisted of 23 members from 15 countries, all of whom  played significant roles in the discovery or application of knowledge regarding these factors.

No
Medical History
YYYY-MM-DD
1954
1954 | May
1954 | May 02
MASAC's First President
MASAC's First President

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

No
NHF History
YYYY-MM-DD
1954
1954 | May
1954 | May 02
MASAC Forms
MASAC Forms

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

No
NHF History
YYYY
1954
1954 | Dec
1954 | Dec 31
The Beginning of a Legacy
The Beginning of a Legacy

Dr. Judith Graham Pool publishes her first research paper on hemophilia.

Yes
Medical History
YYYY
1955
1955 | Jan
1955 | Jan 01
Factor XII

Factor XII (also called Hageman factor) was first discovered in 1955 when a routine blood sample of  a man named John Hageman  had  prolonged clotting time in test tubes. Hageman was then examined by hematologist Oscar Ratnoff, who found that Hageman lacked a previously unidentified clotting factor, even though he had no hemorrhagic symptoms.

No
Medical History
YYYY
1955
1955 | Dec
1955 | Dec 31
Infusion Progress
Infusion Progress

American pathologists Robert Langdell, Robert Wagner, and Kenneth Brinkhous develop intravenous infusions of factor VIII (8).

Yes
Medical History
YYYY
1956
1956 | Jan
1956 | Jan 01
Study Concludes

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.

No
Medical History
YYYY-MM-DD
1956
1956 | Feb
1956 | Feb 21
Becoming the National Hemophilia Foundation
Becoming the National Hemophilia Foundation

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.

No
NHF History
YYYY-MM-DD
1956
1956 | Sep
1956 | Sep 29
Becoming Official
Becoming Official

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.

No
NHF History
YYYY
1956
1956 | Dec
1956 | Dec 31
First Annual Symposium
MASAC Forms

NHF hosts its first symposium where MASAC presents its findings.

No
NHF History
YYYY
1956
1956 | Dec
1956 | Dec 31
First Medical Director

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

No
NHF History
YYYY
1956
1956 | Dec
1956 | Dec 31
Michigan Chapter
Michigan Chapter

Hemophilia of Michigan forms.

No
NHF Chapters
YYYY
1957
1957 | Dec
1957 | Dec 31
NHF Gets an Executive

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

No
NHF History
YYYY
1957
1957 | Dec
1957 | Dec 31
VWF Discovered
VWF Discovered

Researchers in Sweden identify von Willebrand factor as the cause of VWD.

Yes
Medical History
YYYY
1958
1958 | Jan
1958 | Jan 01
Hemophilic Arthropathy Publication

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.

No
NHF History
YYYY
1958
1958 | Dec
1958 | Dec 31
Prophy Treatments Begin
Prophy Treatments Begin

Inga Marie Nilsson, a Swedish physician, begins prophylactic treatment in boys with severe hemophilia A.

Yes
Medical History
YYYY-MM-DD
1959
1959 | Apr
1959 | Apr 01
Reader's Digest

An article in an April 1959 issue of Reader's Digest draws mass attention to the challenges facing patients and families with hemophilia.

No
Media Appearances
YYYY
1959
1959 | Dec
1959 | Dec 31
MASAC Publishing
MASAC Publishing

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

No
NHF History

1960s

YYYY-MM-DD
1962
1962 | Mar
1962 | Mar 27
An Ask to Congress

On March 27, 1962, Rep. John Fogarty asks Congress to increase funding for hemophilia research and treatment.

No
NHF Advocacy
YYYY-MM-DD
1962
1962 | Apr
1962 | Apr 16
Appropriation Bill

John Walstrom, the chairman of NHF, pens a letter to Congressman John Fogarty, in which he dubs 1962 "the most important year in the history of the foundation" given the "substantial appropriation for hemophilia research" in a bill that had just been passed by the House.

No
NHF Advocacy
YYYY-MM-DD
1963
1963 | Apr
1963 | Apr 10
The Passing of Lee Henry Ferguson

Lee Henry Ferguson passes away due to complications from hemophilia.

No
NHF History
YYYY
1963
1963 | Dec
1963 | Dec 31
Chapter Growth
Chapter Growth

NHF grows to 23 chapters nationwide.

No
NHF Chapters
YYYY
1963
1963 | Dec
1963 | Dec 31
Indiana Chapter
Indiana Chapter

The Indiana Chapter forms.

No
NHF Chapters
YYYY-MM-DD
1964
1964 | May
1964 | May 02
Coagulation Cascade

An article in the scientific journal Nature details the complex clotting process, calling it the coagulation cascade.

Yes
Medical History
YYYY-MM-DD
1964
1964 | Jul
1964 | Jul 02
Civil Rights Act
Civil Rights Act

The U.S. Congress passes the Civil Rights Act.

Yes
National Legislation
YYYY
1964
1964 | Dec
1964 | Dec 31
New Executive Director

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

No
NHF History
YYYY
1964
1964 | Dec
1964 | Dec 31
MASAC Publication
MASAC Publishing

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

No
NHF History
YYYY
1964
1964 | Dec
1964 | Dec 31
International Organizations
International Organizations

The International Committee on Thrombosis and Haemostasis (ICHT) forms in 1964. This body, in turn, promotes the formation of the current International Society on Thrombosis and Haemostasis (ISTH).

Yes
NHF Partners
YYYY
1965
1965 | Jan
1965 | Jan 01
The Role of the Medical Advisor

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.

No
NHF History
YYYY-MM-DD
1965
1965 | Jul
1965 | Jul 30
Medicare/Medicaid Established
Medicare/Medicaid Established

On July 30, 1965, President Lyndon B. Johnson signs into law legislation that establishes the Medicare and Medicaid programs.

Yes
National Legislation
YYYY
1965
1965 | Dec
1965 | Dec 31
Cryo Discovery
Cryo Discovery

Dr. Judith Graham Pool publishes a paper that notes her discovery that slowly-thawed frozen plasma yields deposits high in Factor VIII. These deposits, called cryoprecipitates - or cryo -, are found to have much greater clotting power than plasma and are given to hemophiliacs to stop bleeding episodes.

Yes
Medical History
YYYY
1966
1966 | Dec
1966 | Dec 31
Joining NHC
Joining NHC

NHF becomes a member of the National Health Council.

No
NHF Partners
YYYY
1966
1966 | Dec
1966 | Dec 31
First Awards of Excellence Given
First Awards of Excellence Given

First NHF Award of Excellence is given.

No
NHF History
YYYY
1966
1966 | Dec
1966 | Dec 31
Inhibitors Identified
Inhibitors Identified

In 1966, Dr. Jeanne Lusher is the first individual to ever identify inhibitors as antibodies to factor VIII.

Yes
Medical History
YYYY
1968
1968 | Jan
1968 | Jan 01
Behavioral Science Study

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.

No
NHF History
YYYY
1968
1968 | Jan
1968 | Jan 01
First Humanitarian Award

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.

No
NHF History
YYYY-MM-DD
1968
1968 | Oct
1968 | Oct 26
Awards of Excellence Given to NHI
First Awards of Excellence Given

The NHI received the NHF's Research and Scientific Achievement Award for its "medical leadership ... tremendous stimulation and support of research activities directly related to the study and treatment of hemophilia."

No
NHF Partners
YYYY-MM-DD
1968
1968 | Nov
1968 | Nov 05
Timmy Strohbach

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

No
NHF History
YYYY
1968
1968 | Dec
1968 | Dec 31
The Passing of Dr. Martin Rosenthal

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

No
NHF History
YYYY
1969
1969 | Dec
1969 | Dec 31
Scholarship Programs

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

No
NHF History
YYYY
1969
1969 | Dec
1969 | Dec 31
First Hemophilia Summer Camp
First Hemophilia Summer Camp

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

No
NHF History
YYYY
1969
1969 | Dec
1969 | Dec 31
New Chapter
New Chapter

The Gateway Hemophilia Association (Missouri chapter) forms after being approached by NHF to start a local chapter for families with hemophilia. With the growing population and need for support, GHA is started.

No
NHF Chapters

1970s

YYYY-MM-DD
1970
1970 | Apr
1970 | Apr 18
The Passing of Dr. Henry H. Jordan

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.

No
NHF History
YYYY-MM-DD
1971
1971 | Dec
1971 | Dec 06
Ryan White
Ryan White

Ryan White, who will become the face of the HIV crisis for the hemophilia community, is born.

Yes
HIV/AIDS Crisis
YYYY
1971
1971 | Dec
1971 | Dec 31
Hep B Antibody Test
Hep B Antibody Test

In 1971, a test for hepatitis B antibodies is developed to identify infected donors; the test is mandated by the FDA for blood donation.

Yes
Medical History
YYYY
1971
1971 | Dec
1971 | Dec 31
Chapter Expansion
Chapter Growth

NHF expands to 54 national chapters.

No
NHF Chapters
YYYY
1971
1971 | Dec
1971 | Dec 31
Identifying Carriers
Identifying Carriers

Dr. Oscar Ratnoff and his colleagues at Case Western University publish their findings on an immunulogical assay test that can identify female carriers of hemophilia.

Yes
Medical History
YYYY
1971
1971 | Dec
1971 | Dec 31
NJ Assistance Program
NJ Assistance Program

Thanks to NHF and HANJ advocacy, in 1971, New Jersey passes a bill that authorizes the appropriation of $250,000 in state monies to be directed in establishing an assistance program for hemophiliacs.

No
NHF Advocacy
YYYY-MM-DD
1972
1972 | Sep
1972 | Sep 19
NHBVLBDP Established

The National Heart, Blood Vessel, Lung, and Blood Act of 1972 (P.L. 92-423) enlarged institute authority to advance the national attack on heart, blood vessel, lung, and blood diseases. The act provided for expanded, intensified, and coordinated institute activities in accordance with a comprehensive, specified National Heart, Blood Vessel, Lung, and Blood Disease Program to be planned by the director and the Advisory Council.

It also called for establishment of prevention and control programs; development of 15 new centers for basic and clinical research, training, demonstration, and prevention programs for heart, blood vessel, and blood diseases; and development of 15 such centers for chronic lung diseases.

Yes
National Legislation
YYYY
1972
1972 | Dec
1972 | Dec 31
JGP Fellowship Launch
Cryo Discovery

NHF launches the Judith Graham Pool Research Fellowship.

No
NHF History
YYYY
1972
1972 | Dec
1972 | Dec 31
HTCs in Pennsylvania

Thanks to NHF advocacy, Pennsylvania dedicates $2M to hemophilia treatment centers.

No
NHF Advocacy
YYYY-MM-DD
1973
1973 | Nov
1973 | Nov 15
Senate Committee on Labor & Public Welfare Congressional Testimony
Senate Committee on Labor & Public Welfare Congressional Testimony

On Nov. 15, 1973, a diverse group of NHF advocates met before the Senate Committee on Labor and Public Welfare to testify and advocate for the funding of diagnosis and treatment centers.

No
NHF Advocacy
YYYY
1973
1973 | Dec
1973 | Dec 31
Creation of HTCs

NHF advocates partner with Senator Harrison Williams of New Jersey to sponsor Senate Bill 1326, the Hemophilia Act of 1973, which ultimately passes in 1975. The bill eatabliahes $3M toward a hemophilia treatment center program nationwide.

No
NHF Advocacy
YYYY
1973
1973 | Dec
1973 | Dec 31
Illinois Assistance Program
Illinois Assistance Program

NHF advocacy helps the state of Illinois dedicate $500,000 in public funding toward hemophilia assistance.

No
NHF Advocacy
YYYY
1974
1974 | Dec
1974 | Dec 31
Great Lakes
Great Lakes

The Great Lakes Hemophilia Foundation becomes an NHF chapter. The chapter was founded in part by Dr. Jacob (Jay) Shanberge, the director of pathology and laboratory medicine at Mt. Sinai Hospital in Milwaukee.

No
NHF Chapters
YYYY-MM-DD
1975
1975 | Jan
1975 | Jan 15
Kennedy Sponsors HTCs
On January 15, 1975, Sen. Edward Kennedy introduces the creation of national hemophilia treatment centers within "An Act to amend the Public Health Service Act and related health laws to revise and extend the health revenue sharing program, the family planning programs, the community mental health centers program, the program for migrant health centers and community health centers, the National Health Service Corps program, and the programs for assistance for nurse training, and for other purposes."
No
NHF Advocacy
YYYY
1975
1975 | Dec
1975 | Dec 31
At-Home Care Increases
At-Home Care Increases

For many patients, at-home care becomes a reality thanks to the industrial manufacturing and commercial availability of freeze-dried plasma concentrates of FVIII for HA and of the coagulation factors (II, VII, IX, X).

Yes
Medical History
YYYY
1975
1975 | Dec
1975 | Dec 31
The King Years
The King Years

George King was elected president of NHF.

No
NHF History
YYYY-MM-DD
1976
1976 | Apr
1976 | Apr 22
Genetic Diseases Act
In 1976, P.L. 94-278, the National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic Diseases Act, consolidated the separate 1972 acts for sickle cell anemia (P.L. 92-294) and Cooley's anemia (P.L. 92-414), and added six other genetic conditions. P.L. 94-278 aimed "to establish a national program to provide for basic and applied research, research training, testing, counseling, and information and education programs with respect to genetic diseases, including sickle cell anemia, Cooley's anemia, Tay-Sachs disease, cystic fibrosis, dysautonomia, hemophilia, retinitis pigmentosa, Huntington's chorea, and muscular dystrophy." In 1978, Congress amended the Act to include "genetic conditions" (P.L. 85-262). Congress appropriated more than $35 million over the course of three fiscal years (1979-1981) to implement the National Genetic Disease Act (P.L. 95-626).
No
National Legislation
YYYY-MM-DD
1976
1976 | Jun
1976 | Jun 25
NHLBI Forms
NHLBI Forms

The NHLI was renamed the National Heart, Lung, and Blood Institute (NHLBI), reflecting an expansion in blood-related activities within the Institute.

Yes
Medical History
YYYY
1976
1976 | Dec
1976 | Dec 31
HTC History
HTC History

In 1976, the Children’s Hospital Los Angeles Hemophilia Treatment Center is established. It is one of the first Hemophilia Treatment Centers in the United States. The Center is originally called the Hemophilia Comprehensive Care Center.

Yes
Medical History
YYYY
1976
1976 | Dec
1976 | Dec 31
HTCs Act of 1975
HTCs Act of 1975

NHF successfully petitions Congress for The Hemophilia Treatment Centers Act of 1975, which authorizes federal funding to establish a network of comprehensive hemophilia treatment centers (Section 606 of P.L.94-63, amended Title XI of the Public Health Service Act) for the care and treatment of individuals with hemophilia. Hemophilia is a collection of genetic disorders that impair the body's ability to control bleeding. Common hemophilias are types A, B, and C. Von Willibrand disease is another genetic bleeding disorder included in these treatment centers. In 1976, approximately $3M are appropriated to fund more than 20 centers.

No
NHF Advocacy
YYYY
1976
1976 | Dec
1976 | Dec 31
Behind-the-scenes of HTC Formation

NHF advocacy leads 24 states to create funding for hemophilia programs and treatment by 1976. Nationally, Senator Edward Kennedy sponsors legislation for public law S.66 in the 94th Congress.

No
NHF Advocacy
YYYY
1977
1977 | Dec
1977 | Dec 31
DDAVP Development
DDAVP Development

It is discovered that desmopressin acetate (DDAVP) could boost levels of both factor VIII (8) and von Willebrand factor (vWF). DDAVP remains a useful option in mild forms of these conditions.

No
Medical History
YYYY
1977
1977 | Dec
1977 | Dec 31
FDA Clinical Trial History
FDA Clinical Trial History

In 1977, the FDA issued a guideline banning most women of "childbearing potential" from participating in clinical research studies. This was the result of certain drugs (most notably thalidomide) causing serious birth defects. At the time, the focus was on protecting the most vulnerable populations at all other costs.

Yes
Medical History
YYYY
1977
1977 | Dec
1977 | Dec 31
Combined Federal Campaign
Combined Federal Campaign

NHF is accredited by the Combined Federal Campaign.

No
NHF History
YYYY
1978
1978 | Dec
1978 | Dec 31
WI Home Care Bill
WI Home Care Bill

Thanks to NHF advocates, the Wisconsin Hemophilia Home Care Bill becomes law.

No
NHF Advocacy

1980s

YYYY
1980
1980 | Dec
1980 | Dec 31
Michigan Legislation
Michigan Legislation

In 1980, Hemophilia of Michigan works with state legislators to extend specialized healthcare coverage provided by Michigan’s Children’s Special Healthcare Services (CSHCS) to adults as well as children with bleeding disorders.

No
NHF Chapters
YYYY
1981
1981 | Dec
1981 | Dec 31
AIDS in the U.S.
AIDS in the U.S.

The CDC reports the first cases of AIDS in the USA.

Yes
HIV/AIDS Crisis
YYYY
1981
1981 | Dec
1981 | Dec 31
"Biomedical Success Story"
Capital Building

U.S. Congress cites hemophilia as "biomedical success story" after health and economic benefits of new technology treatment and comprehensive care are documented.

No
National Legislation
YYYY-MM
1982
1982 | Jul
1982 | Jul 01
NHF Partners with CDC, FDA, and NIH
NHF Partners with CDC, FDA, and NIH

NHF agrees to work with CDC, FDA, and NIH to establish surveillance system of hemophiliacs with symptoms of opportunistic infections

No
HIV/AIDS Crisis
YYYY-MM-DD
1982
1982 | Jul
1982 | Jul 16
NHF is Warned
NHF is Warned

On July 16, 1982, NHF was alerted by the Centers for Disease Control that three people with hemophilia had come down with the newly defined immune-deficiency syndrome. When the NHF began to investigate, however, the organization's leaders decided that the risk for hemophiliacs from not using the blood concentrate was far greater than the risk posed by this new disease, which seemed to be affecting very few people.

No
HIV/AIDS Crisis
YYYY
1982
1982 | Dec
1982 | Dec 31
Hep. B. Vaccination
Hep. B. Vaccination

Hepatitis B vaccination is introduced in the U.S.

Yes
Medical History
YYYY
1982
1982 | Dec
1982 | Dec 31
AIDS Impacts Hemophilia Patients
AIDS Impacts Hemophilia Patients

The CDC reports the first AIDS cases in people with hemophilia through the use of tainted blood products used to treat bleeding disorders.

Yes
HIV/AIDS Crisis
YYYY
1982
1982 | Dec
1982 | Dec 31
FIX Cloning
FIX Cloning

Cloning of factor IX is first reported.

Yes
Medical History
YYYY-MM-DD
1983
1983 | Jan
1983 | Jan 17
Blood Ban

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

No
HIV/AIDS Crisis
YYYY-MM
1983
1983 | Feb
1983 | Feb 01
DDAVP
DDAVP

DDAVP is declared by researchers to be a useful alternative to blood components in moderate hemophilia A and Von Willebrand disease.

Yes
Medical History
YYYY-MM
1983
1983 | Mar
1983 | Mar 01
Funds for Research
Funds for Research

NHF urges Congress to provide additional funding to support AIDS research.

No
NHF Advocacy
YYYY-MM-DD
1983
1983 | Jul
1983 | Jul 19
BPAC Meeting
BPAC Meeting

On July 19, 1983, the FDA's Blood Products Advisory Committee (BPAC) was devoted to the question of what was known about AIDS and its transmission through the blood supply, and what BPAC should recommend to the FDA concerning recalls (FDA, BPAC 1983; see also Chapter 3).

The National Hemophilia Foundation seems to have been the only participant at the BPAC meeting that supported the automatic recall of any product that was found to have been manufactured with plasma taken from a person subsequently determined to have AIDS or to have had characteristics strongly suggestive of AIDS. Indeed, the BPAC recall agenda seems to have been set by an NHF Medical and Scientific Advisory Council (MASAC) position favoring automatic recall (FDA, BPAC 1983). However, that position had been formulated by the NHF prior to the BPAC meeting. At the meeting itself, NHF medical director, Louis Aledort, first stated the NHF position, then followed by stating his personal view that the NHF position had been formulated prior to the consideration of the Pharmaceutical Manufacturers Association assertions concerning the possible impact of automatic recalls on the availability of AHF concentrate (FDA, BPAC 1983).

No
HIV/AIDS Crisis
YYYY-MM-DD
1983
1983 | Aug
1983 | Aug 25
Blood Product Recall
Blood Product Recall

August 25–26, 1983: Hyland Therapeutics and ARC announce recall of lots (two each) from identified donors who were confirmed to have died of AIDS. NHF reaffirms its recommendation that patients maintain use of concentrate or cryoprecipitate as prescribed by their physicians.

Yes
HIV/AIDS Crisis
YYYY
1983
1983 | Dec
1983 | Dec 31
HIV Identified
HIV Identified

A retrovirus, the Human Immunodeficiency Virus (HIV), is identified in 1983 as the pathogen responsible for Acquired Immunodeficiency Syndrome (AIDS).

Yes
HIV/AIDS Crisis
YYYY-MM
1984
1984 | Feb
1984 | Feb 01
Factor VIII Cloned
Factor VIII Cloned

A research team led by Dr. Jay Toole successfully cloned the human gene for the production of the blood-clotting protein Factor VIII.

Yes
Medical History
YYYY-MM
1984
1984 | Jul
1984 | Jul 01
LAV to HIV
Red Blood Cells

CDC Morbidity and Mortality Weekly Report (MMWR) reported 72% of severe asymptomatic hemophiliac had antibody to LAV antigens using the Western blot test. This virus is now known to be a member of the HIV-1 group of viruses.

Yes
Medical History
YYYY-MM-DD
1984
1984 | Oct
1984 | Oct 13
MASAC Recommendation to Minimize Risk of HIV Transmission
MASAC Recommendation

NHF's MASAC recommends use of heat-treated plasma concentrates in order to minimize the risk of transmission of HIV-I (human immunodefficiency virus).

No
HIV/AIDS Crisis
YYYY-MM
1984
1984 | Nov
1984 | Nov 01
AIDS Impact Increases
AIDS Impact Increases

The media reports that 70%-90% of hemophiliacs in the U.S. are infected with AIDS.

Yes
Medical History
YYYY-MM
1984
1984 | Dec
1984 | Dec 01
Ryan White AIDS Diagnosis
Ryan White AIDS Diagnosis

Ryan White, a hemophilia patient, is diagnosed with AIDs after a blood transfusion at age 13.

Yes
HIV/AIDS Crisis
YYYY
1984
1984 | Dec
1984 | Dec 31
HTC Regional Cores
HTC Regional Cores

In 1984, Hemophilia of Michigan is appointed the federal Regional Core Center for Michigan, Ohio, and Indiana HTCs.

No
NHF Chapters
YYYY-MM-DD
1986
1986 | Feb
1986 | Feb 05
AIDS Report Authorized

On February 5, 1986, President Reagan finally authorized Surgeon General C. Everett Koop to produce a Surgeon General’s Report on Acquired Immune Deficiency Syndrome. This occurred during a speech given to employees of the Department of Health and Human in which Reagan stated: “I’m asking the Surgeon General to prepare a major report to the American people on AIDS.”

Yes
HIV/AIDS Crisis
YYYY-MM-DD
1986
1986 | Dec
1986 | Dec 02
NHF Responds to Koop

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.

No
NHF History
YYYY
1986
1986 | Dec
1986 | Dec 31
Gene Isolation
Gene Isolation

Isolation of the genes controlling factor VII and von Willebrand's factor production. (Factor VII deficiency results in a rare form of hemophilia, but also may have broad applications in treating more common forms of hemophilia.)

Yes
Medical History
YYYY-MM-DD
1987
1987 | Jan
1987 | Jan 27
The Passing of Robert Lee Henry
The Passing of Robert Lee Henry

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

No
NHF History
YYYY-MM-DD
1987
1987 | Jul
1987 | Jul 30
H.R.3071

NHF advocates rally around H.R. 3071, the AIDS Federal Policy Act of 1987, which is sponsored by Rep. Henry Waxman of California.

No
NHF Advocacy
YYYY-MM-DD
1988
1988 | Dec
1988 | Dec 01
World AIDS Day

The first World AIDS Day is noted as a global health day on December 1, 1988.

No
HIV/AIDS Crisis
YYYY
1988
1988 | Dec
1988 | Dec 31
HIV Impact
HIV Impact

NHF recognized that over 60% of America’s 20,000 people with hemophilia had contracted HIV.

No
YYYY
1989
1989 | Jan
1989 | Jan 01
The National Commission on AIDS

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.

No
NHF History
YYYY-MM
1989
1989 | Nov
1989 | Nov 01
VWF Gene Cloned
VWF Gene Cloned

An article in the Journal of Biological Chemistry announces that the structure of the gene for human von Willebrand factor is succesfully cloned for the first time.

Yes
Medical History
YYYY
1989
1989 | Dec
1989 | Dec 31
WONN & MANN
WONN & MANN

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

No
NHF History
YYYY
1989
1989 | Dec
1989 | Dec 31
HCV
HCV

The HCV is first identified; it soon becomes clear that an even higher proportion of people with hemophilia have been exposed to this virus, which can result in chronic liver disease.

Yes
Medical History

1990s

YYYY-MM-DD
1990
1990 | Apr
1990 | Apr 08
The Passing of Ryan White
The Passing of Ryan White

Ryan White, a hemophilia and AIDs advocate, passes away from complications due to HIV.

Yes
HIV/AIDS Crisis
YYYY-MM
1990
1990 | Aug
1990 | Aug 01
Ryan White CARE Act
Ryan White CARE Act

Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in August 1990.

Yes
NHF Advocacy
YYYY-MM-DD
1990
1990 | Aug
1990 | Aug 18
CARES Act
CARES Act

Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.

Yes
National Legislation
YYYY-MM-DD
1990
1990 | Sep
1990 | Sep 14
Gene Therapy
Gene Therapy

W. French Anderson and his colleagues at the NIH perform the first approved gene therapy procedure on a four-year-old girl born with severe combined immunodeficiency.

Yes
Medical History
YYYY-MM-DD
1990
1990 | Oct
1990 | Oct 01
Genome Mapping Begins
Genome Mapping Begins

The Human Genome Project begins.

Yes
Medical History
YYYY
1991
1991 | Dec
1991 | Dec 31
HANDI Launches
HANDI Launches

NHF establishes HANDI (Hemophilia and AIDS/HIV Network for the Dissemination of Information).

No
NHF History
YYYY-MM-DD
1992
1992 | Nov
1992 | Nov 04
Veterans Health Care Act
Veterans Health Care Act

Thanks to NHF advocates and partners, the Veterans Health Care Act of 1992 designates HTCs as original covered entities
eligible to participate in the 340B program.

No
National Legislation
YYYY-MM-DD
1992
1992 | Dec
1992 | Dec 11
Factor VIII Product Approval
Factor VIII Product Approval

The first recombinant factor VIII (8) product is approved by the Food and Drug Administration (FDA).

Yes
Medical History
YYYY
1992
1992 | Dec
1992 | Dec 31
Dr. Glenn Pierce Becomes NHF President
Dr. Glenn Pierce Becomes NHF President

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.

No
NHF History
YYYY-MM
1993
1993 | Oct
1993 | Oct 01
Lawsuit
Lawsuit

A coalition of hemophiliacs who contracted HIV/AIDS due to improper guidance from pharmaceutical companies and NHF around blood safety file a class action lawsuit.

No
HIV/AIDS Crisis
YYYY-MM
1993
1993 | Oct
1993 | Oct 01
The Common Factor

A 1993 newsletter lambasts NHF for deciding "for its constituents instead of deciding with them" in regards to the ongoing HIV crisis.

No
HIV/AIDS Crisis
YYYY-MM-DD
1993
1993 | Dec
1993 | Dec 21
Stephen Christmas Passes

Stephen Christmas, the inspiration behind the alternative name for hemophilia b ("Christmas Disease"), passed away on December 21, 1993

No
Medical History
YYYY
1993
1993 | Dec
1993 | Dec 31
NHF & CDC Co-Op Agreement
NHF and CDC Co-Op Agreement

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

No
NHF History
YYYY
1993
1993 | Dec
1993 | Dec 31
New FDA Guidelines for Clinical Trials
New FDA Guidelines for Clinical Trials

In 1993, the FDA issued a new guideline and formally rescinded the 1977 policy that banned most women from participating in studies. To ensure that the policies for inclusion were firmly implemented by NIH, the Congress made what had previously been policy into law, through a section in the NIH Revitalization Act of 1993.

Yes
Medical History
YYYY
1993
1993 | Dec
1993 | Dec 31
Camp Standards
Chapter Event - Camp 1

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

No
NHF History
YYYY-MM-DD
1994
1994 | Aug
1994 | Aug 03
Legal Settlements
Legal Settlements

Pharmceutical companies settle with hemophiliacs who contracted HIV/AIDs through blood products.

Yes
HIV/AIDS Crisis
YYYY-MM
1994
1994 | Dec
1994 | Dec 01
European Accord Comparison

In a 1994 edition of Blood Coagulation & Fibrinolysis, Dr. H.R. Roberts draws a comparison of the European Accord to MASAC's recommendations for prophylaxis treatments.

No
Medical History
YYYY
1994
1994 | Dec
1994 | Dec 31
MASAC Prophylaxis Recommendations
MASAC Prophylaxis Recommendations

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

No
NHF History
YYYY
1994
1994 | Dec
1994 | Dec 31
Dr. Jeanne Lusher Makes History
Honoring Jeanne M. Lusher, MD, Pioneer in Hematology

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

No
NHF History
YYYY
1994
1994 | Dec
1994 | Dec 31
WHO and WFH on Prophy
WHO and WFH on Prophy

The World Health Organization and the World Federation of Hemophilia recommend prophylaxis as the treatment of choice in children with hemophilia, based on evidence-driven studies.

Yes
Medical History
YYYY-MM-DD
1995
1995 | Jul
1995 | Jul 25
Val Bias Delivers Congressional Testimony

Val Bias, community advocate and future NHF CEO, testifies before Congress to amend the Employee Retirement Income Security Act of 1974, hoping to increase the purchasing power of individuals and employers, to protect employees whose health benefits are provided through multiple employer welfare arrangements, and to provide increased security of health care benefits.

No
NHF Advocacy
YYYY-MM
1996
1996 | Apr
1996 | Apr 01
HemAware
HemAware

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

No
NHF History
YYYY
1996
1996 | Dec
1996 | Dec 31
Gene Therapy Workshop
gene therapy

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.

No
NHF History
YYYY
1996
1996 | Dec
1996 | Dec 31
Greater Florida Chapter
Hemophilia Foundation of Greater Florida

The Hemophilia Foundation of Greater Florida forms and joins NHF as a chapter.

No
NHF Chapters
YYYY-MM-DD
1997
1997 | Mar
1997 | Mar 11
Ricky Ray Act Introduced
Ricky Ray Act Introduced

With the guidance of NHF advocates, Rep. Porter J. Goss of Florida introduces the H.R.1023 - Ricky Ray Hemophilia Relief Fund Act of 1998.

No
HIV/AIDS Crisis
YYYY
1997
1997 | Dec
1997 | Dec 31
Product Development
Product Development

The development of a bypassing agent in 1997 offers inhibitor patients an alternative product to help stop bleeds and joint damage.

Yes
Medical History
YYYY
1997
1997 | Dec
1997 | Dec 31
FIX FDA Approval
FIX FDA Approval

The first factor IX (9) product granted FDA approval.

Yes
Medical History
YYYY-MM-DD
1998
1998 | Oct
1998 | Oct 01
50th Anniversary

NHF marks its 50th anniversary with a special issue of HemAware.

No
NHF History
YYYY-MM-DD
1998
1998 | Nov
1998 | Nov 12
Ricky Ray Hemophilia Fund Act
Ricky Ray Act Introduced

The Ricky Ray Hemophilia Fund Act of 1998 becomes law, providing compassionate payments to individuals with blood-clotting disorders, such as hemophilia, who contracted human immunodeficiency virus due to contaminated blood products.

No
National Legislation
YYYY
1998
1998 | Dec
1998 | Dec 31
Women with Bleeding Disorders

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

No
NHF History
YYYY
1998
1998 | Dec
1998 | Dec 31
Time for a Cure

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

No
NHF History
YYYY-MM-DD
1999
1999 | Jun
1999 | Jun 25
Golf Fundraiser

NHF launches a golf fundraising event.

No
NHF History
YYYY-MM
1999
1999 | Sep
1999 | Sep 01
NHF/CDC Survey
NHF/CDC Survey

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.

No
NHF History
YYYY-MM
1999
1999 | Nov
1999 | Nov 01
Newborn Study

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.

No
NHF History
YYYY
1999
1999 | Dec
1999 | Dec 31
NHF's First Female President

NHF elects its first female board president, Katherine Muir.

No
NHF History

2000s

YYYY-MM
2000
2000 | Mar
2000 | Mar 01
NHF/CDC Knowledge, Attitudes, and Behavior Survey
NHF/CDC Knowledge, Attitudes, and Behavior Survey

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.

No
NHF History
YYYY-MM-DD
2000
2000 | Dec
2000 | Dec 11
The Passing of Dr. Kenneth Brinkhous
The Passing of Dr. Kenneth Brinkhous

Dr. Kenneth Brinkhous, the first chair of MASAC, passes away.

Yes
Medical History
YYYY
2000
2000 | Dec
2000 | Dec 31
Project Red Flag
Project Red Flag

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."

No
NHF History
YYYY
2000
2000 | Dec
2000 | Dec 31
Career Development Award
Career Development Award

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

No
NHF History
YYYY-MM
2001
2001 | Apr
2001 | Apr 01
NCBDDD Formation
NCBDDD Formation

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) was established in April 2001 as a result of The Children’s Health Act of 2000.

Yes
NHF Partners
YYYY
2001
2001 | Dec
2001 | Dec 31
HTC Roles
HTC Roles

HTC roles for Regional director/regional coordinator responsibilities are standardized.

Yes
Medical History
YYYY
2002
2002 | Jan
2002 | Jan 01
Thalassemia Blood Safety Program

The CDC teams up with Cooley's Anemia Foundation to create a blood safety program modeled after the successful program already in place for hemophilia patients.

No
Medical History
YYYY
2002
2002 | Dec
2002 | Dec 31
NCBDDD Merger
NCBDDD Merger

The Division of Blood Disorders joins NCBDDD.

Yes
NHF Partners
YYYY
2002
2002 | Dec
2002 | Dec 31
NYLI Launch
NYLI Launch

NHF launches NYLI, the National Youth Leadership Institute, providing18- to 24-year-olds with a bleeding disorder, or those who have a sibling with one, leadership opportunities to “encourage personal growth, effect change and positively influence others.”

No
NHF History
YYYY-MM-DD
2003
2003 | Jan
2003 | Jan 03
Blood Safety Update
Blood Safety Update

An assessment of data from CDC’s Universal Data Collection (UDC) system, published in Morbidity and Mortality Weekly Report (MMWR), demonstrates that since 1998, no new infections of hepatitis A, B, and C or HIV have been linked to blood products used to treat hemophilia.

Yes
Medical History
YYYY-MM-DD
2003
2003 | Apr
2003 | Apr 14
Genome Mapping Completed
Genome Mapping Completed

The Human Genome Project (HGP) was one of the great feats of exploration in history. An international team of researchers sequenced and mapped the genome of homo sapiens.

Yes
Medical History
YYYY
2003
2003 | Dec
2003 | Dec 31
Connections for Learning
Connections for Learning

NHF launches its "Connections for Learning" travel grant programs to allow more families to attend the annual conference.

No
NHF History
YYYY
2003
2003 | Dec
2003 | Dec 31
Clinical Fellowship Created
Clinical Fellowship Created

In 2003, NHF launched a Clinical Fellowships program that allows early career physicians to train with mentors at hemophilia treatment centers (HTCs) across the country.

No
NHF History
YYYY-MM
2004
2004 | Mar
2004 | Mar 01
Awareness Month
Awareness Month

Thanks to NHF and chapter advocates, March becomes "Hemophilia Awareness Month" in Illinois.

No
NHF Advocacy
YYYY-MM
2004
2004 | Aug
2004 | Aug 01
Testing for HIV and Hep C
Testing for HIV & Hep C

An NHLBI-funded study showed that nucleic acid-amplification testing for HIV-1 and hepatitis C virus further safeguards the nation's blood supply.

Yes
Medical History
YYYY-MM-DD
2004
2004 | Nov
2004 | Nov 08
VWD Survey

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.

No
NHF History
YYYY
2004
2004 | Dec
2004 | Dec 31
VWD & Women
VWD & Women

Results of a CDC survey of women with von Willebrand disease (VWD), published in Haemophilia, find that there is an average of 16 years between the onset of symptoms and diagnosis of a bleeding disorder, pointing to the need for timely referral by gynecologists and other providers to a Hemophilia Treatment Center (HTC) and specialty testing by trained lab personnel to ensure proper diagnosis and treatment.

Yes
Medical History
YYYY-MM
2005
2005 | Aug
2005 | Aug 01
Hurricane Katrina
Hurricane Katrina

NHF provides support to Gulf area HTCs and families in the wake of Hurricane Katrina.

No
NHF History
YYYY-MM
2005
2005 | Nov
2005 | Nov 01
Inhibitor Summits
Inhibitor Education Summits

The first-ever NHF Inhibitor Summit takes place in Philadelphia.

No
NHF History
YYYY
2005
2005 | Dec
2005 | Dec 31
Playing it Safe
Playing it Safe

NHF updates a popular 1996 publication about children safety during physical activities and retitles it "Playing it Safe."

No
NHF History
YYYY
2005
2005 | Dec
2005 | Dec 31
Camp Standards Update
Camp Standards Update

Health Center Standards for Camps Serving Persons with Bleeding Disorders, first developed in 1993, were updated at the 2005 North American Camping Conference of Hemophilia Organizations (NACCHO) Conference in Tempe, Arizona.

No
YYYY-MM-DD
2006
2006 | Jun
2006 | Jun 03
MASAC Recommendation
MASAC recommends that bypassing agents be used in patients with hemophilia A or B with inhibitors to prevent or control bleeding in settings in which clotting factor VIII or IX would otherwise be used, including before and after surgery and physical therapy.
No
NHF History
YYYY
2006
2006 | Dec
2006 | Dec 31
HIRS Study
HIRS Study

CDC initiates the Hemophilia Inhibitor Research Study (HIRS). Results of this study have been crucial in understanding which hemophilia patients are at highest risk of developing inhibitors (antibodies) that reduce the effectiveness of their treatment products.

Yes
Medical History
YYYY-MM-DD
2007
2007 | Apr
2007 | Apr 04
Marco Andretti Partnership
Marco Andretti

NHF announces partnership with race car driver Marco Andretti.

No
NHF History
YYYY
2007
2007 | Dec
2007 | Dec 31
Prophy Adoption
Prophy Adoption

Based on the published results of a clinical trial, prophylactic (preventative) treatment becomes the standard of care in the United States for people with hemophilia in an effort to decrease the frequency and occurrence of bleeds, and thus, prevent joint damage.

Yes
Medical History
YYYY
2008
2008 | Jan
2008 | Jan 01
Pharmacy Standards

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.

No
NHF History
YYYY-MM
2008
2008 | Feb
2008 | Feb 01
VWD Guidelines
VWD Guidelines

The NHLBI issued the first U.S. guidelines for the diagnosis and management of von Willebrand Disease, the most common inherited bleeding disorder.

Yes
Medical History
YYYY-MM-DD
2008
2008 | May
2008 | May 20
The Passing of Dr. Oscar Ratnoff
The Passing of Dr. Oscar Ratnoff

Dr. Oscar Ratnoff, a pioneering expert on blood clotting, passes away.

Yes
Medical History
YYYY-MM-DD
2008
2008 | Jun
2008 | Jun 01
Run/Walk Program
Unite for Bleeding Disorders

NHF launches Hemophilia Walk program, which becomes Unite for Bleeding Disorders. The first year featured walks in five different cities.

No
NHF Chapters
YYYY-MM
2008
2008 | Jul
2008 | Jul 01
National Prevention Program Survey
National Prevention Program Survey

Between July 2008 and May 2009, CDC and NHF conducted a follow-up survey, the results of which were compared with data from the national baseline survey. The follow-up survey focused on many of the same areas as the baseline survey, including knowledge, attitudes, and behaviors associated with key prevention activities among youth and adults with hemophilia. In addition, the 2008–2009 follow-up survey collected information about the dissemination of the national “Do the 5!” prevention campaign messages and message recall of consumers. Both evaluations targeted adult men with hemophilia, parents of sons with hemophilia aged 9 years or younger, and youth aged 13–21 with hemophilia. Throughout this evaluation, findings showed the impact of the National Prevention program and the extent that target audience members are aware of, and able to recall, the prevention messages of the “Do the 5!” campaign.

No
NHF History
YYYY
2008
2008 | Dec
2008 | Dec 31
Val Bias Becomes CEO
Val Bias Retires

Val Bias, a longtime community member and advocate, becomes NHF's CEO.

No
NHF History
YYYY
2008
2008 | Dec
2008 | Dec 31
ACT Initiative Launches
ACT Launches

NHF launches the ACT Initiative (Access to Care Today; Achieving Cures for Tomorrow), which had the overarching goal of developing a stronger national organization that could effectively advance its mission on behalf of the entire community of individuals affected by hemophilia and bleeding disorders. To this end, four major goals were identified and adopted as the foundational plan for the organization’s transformation: 1. A strong network of chapters united with one vision and one voice, 2. A major funder of research for better treatments and, ultimately, a cure, 3. An effective national advocacy program to ensure access to care, and 4. The ability to act as the premier source of information and education. The ACT Initiative brought about growth and transformation for the entire community, and the benefits continue today.

No
YYYY
2008
2008 | Dec
2008 | Dec 31
NYC Chapter Incorporated
NYC Chapter Incorporated

The New York City Hemophilia Chapter (NYCHC) was incorporated in and obtained its 501 (c)(3) status in 2008, and became a NHF chapter in 2009.

No
NHF Chapters
YYYY-MM-DD
2009
2009 | Feb
2009 | Feb 28
Rare Disease Day
Rare Disease Day

Rare Disease Day begins in the USA.

Yes
Medical History
YYYY-MM-DD
2009
2009 | Oct
2009 | Oct 08
Romanov Family Discovery
Romanov Family Discovery

Scientists publish findings that reveal that Alexei, the hemophiliac prince of the Romanov family, specifically had hemophilia B.

Yes
Medical History
YYYY
2009
2009 | Dec
2009 | Dec 31
NYC Chapter Joins
NYC Chapter Joins

The NYC Chapter joins NHF.

No
NHF Chapters

2010s

YYYY-MM-DD
2010
2010 | Mar
2010 | Mar 09
National Conference on Blood Disorders
National Conference on Blood Disorders

CDC, along with the Health Resources and Services Administration, the National Institutes of Health, Hemophilia of Georgia, and the American Society of Hematology, hosts the first National Conference on Blood Disorders in Public Health in Atlanta, GA.

Yes
NHF Partners
YYYY-MM-DD
2010
2010 | Sep
2010 | Sep 05
Betty Jane Henry
Betty Jane Henry

Betty Jane Henry, one of NHF's co-founders, passes away.

No
YYYY-MM-DD
2010
2010 | Nov
2010 | Nov 16
Victory for Women
Victory for Women

NHF launches Victory for Women to support women living with a bleeding disorder.

No
YYYY
2010
2010 | Dec
2010 | Dec 31
Bad Blood
Bad Blood

The movie Bad Blood debuts, chronologizing the HIV crisis in the hemophilia community.

Yes
Media Appearances
YYYY-MM
2011
2011 | Mar
2011 | Mar 01
Obesity Concerns
Obesity Concerns

Results from a CDC study, published in Haemophilia, document that obesity is an independent risk factor for poor joint mobility in males with hemophilia.

Yes
Medical History
YYYY-MM-DD
2011
2011 | Apr
2011 | Apr 07
Spring Soiree
Spring Soiree

NHF hosts its first-ever Spring Soiree fundraising event.

No
NHF History
YYYY-MM-DD
2011
2011 | Aug
2011 | Aug 01
Hawaii Chapter
NHF Chapter Logo | Hawaii

The Hawaii chapter joins NHF.

No
NHF Chapters
YYYY
2011
2011 | Dec
2011 | Dec 31
Community Counts
Community Counts

To further gather and share information about health issues, medical complications, and causes of death that affect people with bleeding disorders, such as inhibitors, the UDC surveillance system is revised and expanded and renamed Community Counts.

Yes
NHF Partners
YYYY
2011
2011 | Dec
2011 | Dec 31
Steps for Living
Steps for Living

NHF launches Steps for Living program as the go-to online resource for life-stages education.

No
YYYY-MM
2012
2012 | Mar
2012 | Mar 01
Inhibitor Summit
Inhibitor Summit

The CDC hosts its first inhibitor summit.

Yes
Medical History
YYYY-MM
2012
2012 | Jun
2012 | Jun 01
Study Results
Sanofi Provides Fitusiran Trial Updates at ISTH

Results from CDC’s Hemophilia Inhibitor Research Study (HIRS), a pilot surveillance project conducted at CDC from 2006–2009, are published in the Journal of Thrombosis and Haemostasis. The findings from this project led to a modified testing method for inhibitors (antibodies) to hemophilia factor-replacement treatment products.

Yes
Medical History
YYYY-MM
2012
2012 | Nov
2012 | Nov 01
MLOF
Updates on My Life Our Future Genotyping Project

NHF launches "My Life, Our Future" genotyping program.

No
NHF History
YYYY
2012
2012 | Dec
2012 | Dec 31
Alaska Chapter
NHF Chapter Logo | Alaska

The Alaska chapter joins NHF.

No
NHF Chapters