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Hereditary Bleeding Disorders

Hemophilia

Hemophilia is an inherited bleeding disorder that affects 18,000 persons (primarily males) in the United States. The disorder results from deficiencies in blood clotting factors and can lead to spontaneous internal bleeding and bleeding following injuries or surgery. These bleeding episodes can cause severe joint damage, neurological damage, damage to other organ systems involved in the hemorrhage, and, in rare cases, death. Treating the bleeding episodes involves the prompt and proper use of clotting factor concentrates.

von Willebrand disease

The most common bleeding disorder is von Willebrand disease (vWD), which is found in approximately 1-2% of the U.S. population. VWD results from a deficiency or defect in the body's ability to make von Willebrand factor, a protein that helps blood clot. Although VWD occurs in men and women equally, women are more likely to notice the symptoms because of heavy or abnormal bleeding during their menstrual periods and after childbirth.

Prevention activities

  • CDC helps support a network of hemophilia treatment centers (HTCs). This network promotes the management, treatment, and prevention of complications experienced by persons with hemophilia and other hereditary bleeding disorders.

  • CDC has established a surveillance system, the Universal Data Collection project, to monitor blood safety and to conduct research on health-care outcomes. The system is integrated into the HTC network.

For more information

Locate an HTC

HTC Directory and Universal Data Collection project database 

Publications 
Blood safety fact sheet
   PDF format (15 KB) Adobe Acrobat file format

Basic Concepts of Hemophilia: Guide for hemophilia health-care providers (538 KB) Adobe Acrobat file format

Basic Concepts of Hemophilia: Self-study workbook for families (available by mail from the National Hemophilia Foundation)

Soucie JM, Symons J 4th, Evatt B, Brettler D, Huszti H, Linden J, and the Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia. Haemophilia 2001;7(2):198-206.

Soucie JM, Nuss R, Evatt B, Abdelhak A, Cowan L, Hill H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project Investigators.  Mortality among males with hemophilia: relations with source of medical care.  Blood 2000;96:437-442

Soucie JM, Evatt B, Jackson D, and the Hemophilia Surveillance System Project Investigators. Occurrence of hemophilia in the United States. Am J Hematol 1998;59:288-294.
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Organizations

National Hemophilia Foundation

World Federation of Hemophilia

International Society on Thrombosis and Haemostasis

American Society of Hematology

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Disclaimer: Links to non-Federal organizations found at this site are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by CDC or the Federal Government, and none should be inferred. CDC is not responsible for the content of the individual organization webpages found at these links.

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This page was last updated August 05, 2004


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National Center on Birth Defects and Developmental Disabilities

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  Our work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.