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ISTH e-Newsletter: World Hemophilia Day
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Speak Out: Create Change by Marking World Hemophilia Day on April 17

Every year on April 17, World Hemophilia Day is marked around the world to increase awareness of hemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions of men, women and children who have a bleeding disorder yet remain without treatment.

In 2014, the World Hemophilia Day will focus on encouraging the global bleeding disorders community to speak out. Create change. This year WHD is making a particular effort to reach out to young members of the community so as to promote their participation and to develop strong leadership. Together, we want our young members to feel inspired to assume key roles in building and supporting the bleeding disorder community.

World Hemophilia Day provides a unique opportunity for our community to connect locally, and globally, and take action. “No one should ever face living with a rare bleeding disorder alone,” said Alain Weill, WFH President. “Join us and be a part of the worldwide effort to speak out and create change to improve the diagnosis and standards of treatment for those who need it.”

The WFH created World Hemophilia Day in 1989 to bring the community together on April 17, the birthday of WFH founder Frank Schnabel. Join us this April 17 to mark World Hemophilia Day.

For additional information about World Hemophilia Day and to download other materials visit www.wfh.org/whd.

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 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

For 50 years, the World Federation of Hemophilia (WFH), 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 122 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.
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