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When the National Hemophilia Foundation (NHF) was established in 1948, people with hemophilia were known as sufferers, and their life expectancy was less than 30 years. People with hemophilia had no formal means of communication, and no one advocated for research money, better healthcare, or improved insurance coverage. Families were not connected with other families. People had very little way of knowing if they were all alone or if there was anyone in their neighborhoods facing the same problems.

Today, NHF makes an important difference in the lives of people and families with bleeding disorders. It has a national presence, chapters throughout the country, and an intricate communications network bringing healthcare professionals and consumers the latest bleeding disorders news.

Research
For more than 25 years, NHF has awarded fellowship funds to physicians and scientists embarking on research careers. This award, NHF’s Judith Graham Pool (JGP) Postdoctoral Fellowship, was named in honor of a physiologist who in the mid-1960s discovered cryoprecipitate, one of the first treatments for hemophilia. Fellowship recipients have played a role in the development of better treatments, improved testing methods, and a more accurate understanding of the genetics of hemophilia. The support for this research program comes from individuals, bleeding disorders organizations, NHF chapters, and members of industry.

NHF's Medical and Scientific Advisory Council (MASAC) is composed of scientists, physicians, and other treatment professionals who are experts in the fields of:

• bleeding disorders research and care
• AIDS
• hepatitis and other infectious diseases
• blood safety

MASAC promulgates medical information relevant to the bleeding disorders community. This information provides the basis for the standards of care for people with bleeding disorders throughout the country and around the world.

NHF’s research agenda is far reaching. In 1998, NHF embarked on a $5 million capital campaign to raise additional research funds. These funds will support a laboratory grant program. The ultimate goal of this program is to support the research of academic investigators and their laboratories in order to expediate and advance bleeding disorders research.

Education
NHF's commitment to education takes many forms. Each year, NHF hosts educational and leadership meetings including NHF’s signature event, the Annual Meeting. Offering professional tracks, consumer tracks, social events, and a Youth and Adolescent Program, over 2,100 people attended the latest Annual Meeting, including individuals with bleeding disorders, their families, treatment professionals, and members of industry.

Other educational opportunities include medical conferences. NHF sponsors a biennial gene therapy meeting attended by experts interested in developing cures for hemophilia and other bleeding disorders. Other NHF medical meetings have focused on hepatitis and on the recognition and management of women with bleeding disorders. These meetings draw interested physician researchers from around the world.

NHF’s educational programs are also focused on families, women, and the HIV-positive community. Through a cooperative agreement with the Centers for Disease Control and Prevention (CDC), NHF provides technical assistance and grant dollars to its chapters and affiliates to provide education and training for a wide variety of programs. These programs include:

• The First Step Program, a peer education program for families with young children with bleeding disorders
• The Women with Bleeding Disorders Initiative, which offers help by providing information for women with bleeding disorders
• and various peer programs, which concentrate on preventing complications of hemophilia like hepatitis, HIV, and joint disease by providing accessible and reliable information.

In 1998, NHF inaugurated the National Prevention Program, also known as NPP. This campaign is composed of a national health survey, the results of which will give rise to programs targeted to people with hemophilia. NPP’s ultimate goal is to reduce the complications of hemophilia and improve the quality of life for young people, rural residents, men and women with hemophilia.

NHF provides information through its many educational and information publications, including dozens of booklets and pamphlets on topics ranging from the inheritance of hemophilia, to hepatitis, to exercise and sports, to issues facing women with bleeding disorders. Many of these titles are available in Spanish as well as English. NHF also publishes a bimonthly magazine, HemAware, HemAware Jr. for Kids and NHF e*Notes, an online newsletter that is published ten times a year. NHF e*Notes is free to all; HemAware and HemAware Jr. for Kids are free for members. For more information, call toll free (800-42-HANDI) or email handi@hemophilia.org.

For over 10 years, NHF has provided information through HANDI, its information clearinghouse. Each year, more than 7,000 requests for information are processed by HANDI’s information specialists. HANDI’s library contains over 10,000 items on hemophilia, its complications, and related conditions.

Each month, NHF’s web site receives over 600,000 hits. Visitors come to learn about hemophilia and NHF programs, and to stay up to date on treatment and medical issues.

Advocacy
NHF has long had a strong presence in Washington, where it advocates for federal research dollars and far-reaching federal programs. The core of NHF’s advocacy program is in the areas of:

• blood safety
• compensation for HIV-infected members of the bleeding disorders community
• insurance reform
• continued funding for hemophilia treatment centers and research.

To these ends, NHF works closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the Centers for Disease Control and Prevention. In 1975, NHF successfully lobbied Congress and helped pass legislation providing federal dollars for hemophilia treatment centers.

NHF has testified before the FDA advisory committee on blood products and before oversight committees of the US Congress on issues such as reduction in plasma pool size and the establishment of a national patient notification system. In 1995, NHF helped to craft a bill that was introduced in Congress to provide compensation to individuals who became HIV positive through the use of tainted clotting factor in the 1980s. The Ricky Ray Hemophilia Relief Fund Act, named in memory of an HIV-positive teenager with hemophilia, has been passed by both branches of Congress. Currently, funds have been appropriated for a limited number of community members eligible for the Ricky Ray Trust Fund, with plans for more appropriations in the near future.

Ensuring the safety of the blood supply plays a fundamental role in all of NHF’s advocacy programs. NHF is represented on public policy committees in Washington, and has established ongoing communication with the FDA concerning the monitoring of the nation’s blood supply. NHF is the watchdog for all blood safety concerns–a safe blood supply is crucial for everyone, whether or not he or she has a bleeding disorder.

Benefits of Membership
As an NHF member, you will have the opportunity to help build a better future for yourself and everyone affected by hemophilia, von Willebrand disease, and other bleeding disorders. At NHF’s meetings and conferences you can receive the latest information on living with an inherited bleeding disorder while establishing relationships with bleeding disorders families and treatment professionals.

As a member, you can play a role in the growth of all NHF’s programs and services, including:

• NHF’s initiative on women with bleeding disorders
• prevention programs
• NHF’s research agenda
• NHF’s continued development

Learn more about the benefits of membership by calling 800-424-2634, ext. 3731, emailing bmartinez@hemophilia.org or by clicking here.

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Disclaimer
The information contained on the NHF web site is provided for your general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.
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