What is the National
About the National Hemophilia Foundation
Mission: The mission of the National Hemophilia Foundation
is education, research and advocacy on behalf of people with
Vision: The vision of the National Hemophilia Foundation
is to cure bleeding disorders.
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.
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
hepatitis and other infectious diseases
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.
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. (Subscribe
to NHF e*Notes). For
more information, call toll free (800-42-HANDI) or email
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
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.
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
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
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
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
NHF’s research agenda
NHF’s continued development
Learn more about the benefits
of membership by calling 800-424-2634, ext. 3731, or emailing