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FOR IMMEDIATE RELEASE:

Tuesday, October 4, 2011

 HFA Receives Multi-year Cooperative Agreement from CDC

Washington, DC: Hemophilia Federation of America (HFA), a national nonprofit headquartered in Washington, DC is pleased to announce the award of a three year Cooperative Agreement from the Centers for Disease and Control (CDC),  CDC-RFA-DD11-1103 (Module-A): Public Health Surveillance for the Prevention of Complications of Bleeding and Clotting Disorders.

Background:

Hemophilia and other bleeding disorders, characterized by a permanent tendency towards spontaneous or traumatic hemorrhages, are responsible for significant disease burden and negative impact on the quality of life.  Hemophilia occurs in about 1/5000 male births and affects all racial and ethnic groups; it is estimated there are about 20,000 males with hemophilia in the United States at this time. von Willebrand disease (VWD) results from a deficiency or defect in the body’s ability to make von Willebrand factor, a protein that helps blood clot. VWD is thought to occur in up to 1% of the population. Deficiencies of other clotting factor proteins and platelet function defects may cause rarer bleeding disorders.

The complications of hemophilia, von Willebrand disease and other bleeding disorders have been monitored by CDC since 1998 through the Universal Data Collection (UDC) project, a nation-wide effort carried out in federally funded hemophilia treatment centers (HTCs) that longitudinally collects medical records information, joint range of motion measurements and blood specimens for monitoring complications of bleeding disorders, including transmission of blood-borne pathogens.  The project was implemented to monitor the health of people with bleeding disorders and the safety of blood products used for their treatment.

This surveillance system has yielded important public health information for persons with bleeding disorders receiving treatment within the HTC network.  However, surveillance is still needed for those who receive medical care outside HTCs.  HFA will actively seek to contribute to CDC’s collection of information for those who receive care outside of HTCs.

HFA’s goal is to actively encourage persons with bleeding disorders who do not receive care in HTCs to participate in the Public Health Surveillance Program for the Prevention of Complications of Bleeding and Clotting Disorders.

Since 1994, HFA has remained committed to representing persons with bleeding disorders as an advocate, and has served as a reliable source of information, support and financial assistance, regardless of where our members choose to seek their care.  As the treatment opportunities for this community continue to evolve and with the need for a more broad based surveillance system, HFA has the breadth and flexibility to serve in this important role in cooperation with the CDC and the HTC network.

“HFA is thrilled to have this opportunity to further fulfill our mission. For years we have known there are many individuals with bleeding disorders outside of the traditional HTC network. With this partnership, we have additional support to build on our outreach efforts and ensure these members of our community have the opportunity to participate in the UDC if they so choose, adding their information to the vital public health surveillance efforts of the CDC,” states Kimberly Haugstad, Executive Director, HFA.

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The Hemophilia Federation of America is a national 501(c (3) organization consisting of 33 member organizations and individual members who offer assistance and grassroots advocacy on behalf of the bleeding disorders community.   Incorporated in 1994, the HFA provides programs and services to improve the quality of life for persons with hemophilia and von Willebrand disease (VWD).

For more information, visit our website at www.hemophiliafed.org or call 1-800-230-9797.

HFA CONTACT: Susan Swindle, Development Director| 713.203.8548  | s.swindle@hemophiliafed.org

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