Global Bleeding Disorders Community Gathers In Istanbul
June 10th, 2008 | by admin |The XXVIII World Congress on hemophilia and related bleeding disorders opened in Istanbul, attracting over 4,200 leading healthcare professionals and delegates from over 115 countries. It is the largest WFH congress in terms of both number of delegates and number of countries represented.
New research in diagnosis, management and treatment of bleeding disorders will be presented at the World Federation of Hemophilia’s (WFH) biennial meeting, June 1-5, hosted by the Hemophilia Society of Turkey.
“Today is a historical day, not just for the people with hemophilia living in Istanbul but for those living all over the world. for hope, for understanding, and for achieving Treatment for All,” said Congress President Bulent Zulfikar at the opening ceremony today.
The meeting will feature sessions on the medical advances, as well as capacity building for patient organizations, lab diagnosis and testing accuracy, psychosocial and quality of life issues, and dental care, among others.
Of note will be the introduction of two new musculoskeletal measurement tools from the International Prophylaxis Study Group (IPSG). The Hemophilia Joint Health Score (HJHS), developed by the Physical Therapy Working Group of the IPSG, is more sensitive than previous joint scores, and is optimized for use in young boys with no or minimal joint disease. In addition, the Expert Imaging Working Group has developed a single international MRI scoring system for use in people with hemophilia to assess minimal and structural joint changes that are difficult to evaluate with X-rays.
About Bleeding Disorders
Hemophilia is a lifelong, hereditary disorder that affects about one in every 5,000 males. von Willebrand disease is another hereditary bleeding disorder and the most common, affecting about 1 in 1,000 people. Rarer clotting factor deficiencies affect between one in 500,000 and one in 1 million people. Each of these disorders interferes in some way with blood’s ability to clot properly.
With proper treatment and care, people with hemophilia lead normal lives. Without treatment, they face continual pain, disability, isolation, and premature death. Most people with severe hemophilia, who do not receive treatment, die before the age of 19.
Hemophilia is a rare bleeding disorder that affects an estimated 400,000 people worldwide. According to data collected by the WFH, over 200,000 people have been identified with inherited bleeding disorders. Yet some 75 per cent do not receive proper treatment.
About WFH
The WFH is an international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders. Since it was established in 1963, the WFH has grown into a truly global network with member organizations in over 100 countries and official recognition from the World Health Organization.
World Federation of Hemophilia
Stumble it!
