World Hemophilia Day Is April 17: Treatment for All is Vision for All
Friday, April 15, 2016
On April 17, the ISTH will join the global bleeding disorders community in marking World Hemophilia Day. The awareness day, which is organized by the World Federation of Hemophilia (WFH), focuses on bringing attention to a challenge that too many people in the bleeding disorder community face: lack of access to treatment and care.
World Hemophilia Day highlights the need for treatment for all people with a bleeding disorder and how this goal will only be obtained with the help of the community at large. Treatment for All is the Vision of All, but we can only achieve it together.
There is an enormous discrepancy in the level of care available to patients with a bleeding disorder around the world. While some are diagnosed very young, and have medical care throughout their life, most do not. Treatment exists for those with a bleeding disorder but without the correct care many patients still suffer debilitating pain, permanent joint damage, or death.
Ensuring that someone with a bleeding disorder is diagnosed early and is cared for is a shared responsibility. The WFH has been working toward the shared vision of Treatment for All for more than 50 years but the support of the entire community is much needed.
To learn more about hemophilia and other inherited bleeding disorders, visit www.wfh.org.
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 ISTH
Founded in 1969, the ISTH is the leading worldwide not-for-profit organization dedicated to advancing the understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders. ISTH is an international professional membership organization with 4,000 clinicians, researchers and educators working together to improve the lives of patients in more than 93 countries around the world. Among its highly regarded activities and initiatives are education and standardization programs such as its Core Curriculum, research activities; meetings and congresses, peer-reviewed publications, expert committees and World Thrombosis Day on 13 October. Visit ISTH online at www.isth.org.
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.