Global Bleeding Disorders Community Campaigns To Diagnose At-Risk Patients

Main Category: Blood / Hematology
Article Date: 17 Apr 2008 - 4:00 PDT

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No person should have to endure the pain and suffering caused by hemophilia, a rare bleeding disorder that causes dangerous internal bleeding. There are about 400,000 people with hemophilia worldwide, according to the World Federation of Hemophilia, but only about 30% have been diagnosed.

April 17 is World Hemophilia Day, and this year the theme is "Count Me In", focusing on global efforts to identify and diagnose people at risk of bleeding disorders.

"With treatment, people with hemophilia can expect to live a long, healthy life," says Claudia Black, CEO and executive director of the WFH. "Without treatment, they face a life of continual pain, disability, isolation, and premature death. Most people with severe hemophilia who do not receive treatment die before the age of 19."

As part of World Hemophilia Day, patient organizations around the world will be holding events and raising awareness about hemophilia. The WFH is launching a new publication Patient Outreach Guide for Hemophilia and Other Bleeding Disorders.

"The WFH's vision of Treatment for All is that all people with bleeding disorders need access to adequate care and treatment," says Mark Skinner, president of the World Federation of Hemophilia. "The first step to achieving this is to identify those patients."

About hemophilia and other bleeding disorders

Hemophilia, von Willebrand disease and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or it does not work properly. The severity of a person's bleeding disorder usually depends on the amount of clotting factor that is missing or not working. People with hemophilia often experience uncontrolled internal bleeding that starts spontaneously or results from injury. Bleeding into joints and muscles can cause severe pain, disability, and sometimes death.

About World Hemophilia Day

World Hemophilia Day was launched by the World Federation of Hemophilia in 1989 and is celebrated annually in countries around the world. The event is observed on April 17 - the birth date of WFH founder Frank Schnabel.

About the World Federation of Hemophilia (WFH)

The World Federation of Hemophilia (WFH) is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. Established in 1963, it is a global network of patient organizations in more than 100 countries and has official recognition from the World Health Organization. Visit WFH online at http://www.wfh.org.

World Federation of Hemophilia