World Hemophilia Day
Standing Together to Improve Hemophilia Treatment
(Atlanta, April 15, 2009): Behind every person with hemophilia is a much needed team of support. April 17 marks the 20th anniversary of World Hemophilia Day where hemophilia organizations around the world increase awareness of hemophilia and other bleeding disorders.
In Georgia, there are more than 1300 people who have hemophilia or other inherited bleeding disorders. This year's World Hemophilia Day campaign focuses on the importance of comprehensive care, which is central to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders. This is best done through a multidisciplinary approach where all key healthcare professionals come together in specialized care teams to look after all the treatment requirements of a person who has a bleeding disorder.
As part of World Hemophilia Day, Hemophilia of Georgia will be calling attention to the need for comprehensive care here in Georgia and around the world. "On World Hemophilia Day we want to spread the message that comprehensive care is necessary for people with bleeding disorders," says Patricia A. Dominic, CEO of Hemophilia of Georgia.
In addition to observing World Hemophilia Day, Hemophilia of Georgia also supports the World Federation of Hemophilia by coordinating shipment of donated clotting factor to countries around the world. In the past few years, over 3.7 million units of soon-to-expire factor has been sorted, packaged and shipped to World Federation of Hemophilia chapters in 72 countries.
Comprehensive care is important for people who have bleeding disorders in both developing and developed countries. "It may not exist in developing countries and may be threatened in developed countries by government budget cuts and other measures affecting the delivery of healthcare," said Mark Skinner, WFH president. "Our vision of Treatment for All means more than just treatment products. It also means diagnosis, care and treatment by a multidisciplinary team of trained health care specialists."
This year the World Federation of Hemophilia is launching a video on www.wfh.org that explains how comprehensive care makes a difference in the lives of people with bleeding disorders. This video was made possible with funding from Baxter Healthcare Corporation.
The "Together, we care" campaign is part of the WFH's continuing efforts to improve care for people with inherited bleeding disorders around the world.
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 can experience uncontrolled internal bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability. Bleeding into major organs, such as the brain, can cause death.
About Hemophilia of Georgia
Hemophilia of Georgia is a nonprofit organization dedicated to providing services and support for Georgians who have hemophilia, von Willebrand Disease, and other inherited bleeding disorders. The only agency of its kind in the state, Hemophilia of Georgia works to enhance clients' care and quality of life while actively pursuing a cure through research funding. HoG's nonprofit pharmacy provides convenient home delivery of clotting factor and other medications at competitive prices. The agency's mission states that Hemophilia of Georgia exists so that people in Georgia affected by bleeding disorders live as normally and productively as possible. Additional information is available online at www.hog.org.
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 113 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.