CCHF

Since 1969 Central California Hemophilia Foundation has helped people who have inherited (genetic) bleeding disorders including hemophilia, von Willebrand Disease, and certain platelet disorders. All of these conditions are present from birth and last a person’s whole life. While there is treatment, there is no cure.
Von Willebrand Disease (vWD) is believed to be the most common bleeding disorder, affecting as many as 1 in every 100 people. Hemophilia is much rarer – there are only about 17,000 people in the United States who have Hemophilia A (factor VIII deficiency) or Hemophilia B (factor IX deficiency). Rarer still are the inherited platelet disorders. These include Bernard-Soulier Syndrome, Glanzmann’s Thrombasthenia, and Platelet Storage Pool Deficiencies.
This website has links to additional information about these bleeding disorders.
You can find most of the information you are seeking at these websites:
- The National Hemophilia Foundation
- The World Federation of Hemophilia
- The Canadian Hemophilia Society
You may also want to call HANDI, the information service for the National Hemophilia Foundation.
Their number is 1-800-424-2634.
Additional Resources
The Canadian Hemophilia Society and the World Federation of Hemophilia are good resources on the web to read about bleeding disorders. The National Hemophilia Foundation offers HANDI, an information resource center with specialists who can answer questions about bleeding disorders and provide written materials. They are available by phone Monday through Friday, 9 a.m. to 5:30 p.m. EST. Their toll-free number is 1-800-42HANDI. HANDI also responds to e-mail requests at handi@hemophilia.org.