World Hemophilia Day -- April 17

Access to Diagnosis and Treatment Limited for Most People with Bleeding Disorders: Help Close the Gap

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Apr 16, 2012, 03:15 ET

MONTREAL, April 16, 2012 /PRNewswire/ -- An estimated one in 1,000 women and men has a bleeding disorder. However, 75 percent still receive very inadequate treatment or no treatment at all. What will it take to Close the Gap?

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On World Hemophilia Day 2012, the global bleeding disorders community will spread the message to "Close the Gap" in care around the world. Together, we can work toward a day when treatment will be available for all globally.

Many are unaware that if untreated, people with severe hemophilia will face pain, stigma, disability, and might not survive to adulthood. It is also fairly unknown that postpartum hemorrhage is the main cause of maternal death and long-term disability for women around the world.

"The reality is that most people with hemophilia or other bleeding disorders do not receive adequate diagnosis, treatment and management for their conditions," said Mark Skinner, World Federation of Hemophilia (WFH) president. "This is important whether good treatment is already established but needs to be protected, or where treatment needs to be improved."

The WFH launched an awareness campaign this year, through social media, that aims to inform the global community about bleeding disorders and the need for better access to treatment. On World Hemophilia Day, April 17, hemophilia organizations and hemophilia treatment centres around the world are participating by organizing local events, wearing red, and going online to increase awareness of hemophilia and other bleeding disorders.

To learn more about what the global community is doing to "Close the Gap," visit www.wfh.org/facebook or follow WFH on Twitter or YouTube.

World Hemophilia Day is supported with funding by Baxter, Bayer, Biogen Idec Hemophilia, CSL Behring, Inspiration Biopharmaceuticals and Novo Nordisk.

Join the international bleeding disorders community on April 17 to mark World Hemophilia Day. Help us "Close the Gap."

About hemophilia and other bleeding disorders
Hemophilia, von Willebrand disease, inherited platelet disorders, 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 else 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 functioning. People with hemophilia can experience uncontrolled internal bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.

About the World Federation of Hemophilia (WFH)
For 50 years, the World Federation of Hemophilia, an international not-for-profit organization has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 118 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.

For more information please contact:
Sarah Ford
1 514 394 2822
[email protected]
www.wfh.org

SOURCE World Federation of Hemophilia