World Federation of Hemophilia marks historic anniversary for the global bleeding disorders community

For 50 years, the World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

Fifty years ago, on June 25, 1963, the WFH held its first meeting in Copenhagen, Denmark. Working with leaders from a group of national patient associations, Frank Schnabel, WFH founder, convened this global meeting. Representatives from 12 countries attended, including Argentina, Australia, Belgium, Canada, Denmark, France, Germany, Japan, the Netherlands, Sweden, the United Kingdom, and the United States.

As the WFH marks its 50th anniversary, the global bleeding disorders community reflects on the many accomplishments that have been made. However, this is also an opportunity to evaluate all that still needs to occur. The vast majority of people with inherited bleeding disorders, living in developing countries, do not have access to proper care. In fact, 75 per cent of people around the world with a bleeding disorder still receive very inadequate treatment or no treatment at all.

"Looking forward, we will continue to advance the vision of Treatment for All -- with a special focus on the next decade of global development," said Alain Weill, WFH president. "For inspiration, we need only to look back at what devoted volunteers, healthcare workers, and researchers have accomplished since the WFH was founded in 1963."

To help commemorate its anniversary, the WFH will launch a webcast on June 25 featuring Brian O'Mahony, WFH president 1994-2004; Mark W. Skinner, WFH president 2004-2012; and current WFH president Alain Weill. Visit www.wfh.org/50 on June 25 to watch these past and present WFH presidents talk about their personal experiences and learn more about the future vision for our community.

In addition, a live version of this presentation will be given in Copenhagen, Denmark, on June 25. The WFH and the Danish Society of Haemophilia will hold a joint symposium, focusing on future perspectives and challenges for the global bleeding disorders community.

Join with the WFH marking 50 years of advancing Treatment for All. Visit www.wfh.org/50 for more information.

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

For further information:

World Federation of Hemophilia

Sarah Ford

+1 514 875 7944

[email protected]

www.wfh.org

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