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HST Executive Team

News release for World Hemophilia Day. By Haemophilia Society of Tanzania

PRESS RELEASE

Access to diagnosis and treatment limited for most people with bleeding disorders: Help Close the Gap
Dar es Salaam, 17 April 2012: An estimated 1 in 1,000 women and men has a bleeding disorder. However, 75% still receive very inadequate treatment or no treatment at all. What will it take to close the gap? On World Hemophilia Day 2012 help us Close the Gap of care around the world. Together, we can work towards a day when treatment will be available for all globally. On World Hemophilia Day we want to inspire people to help close the gap and to improve accessibility and quality of care so that Treatment for All becomes a reality, says Haemophilia Society of Tanzania (HST). We HST say Haemophilia without disabilities.

Join the international bleeding disorders community on April 17 to mark World Hemophilia Day. For World Hemophilia Day 2012, Mr Richard Minja - The HST President speaking for the Haemophilia Society of Tanzania would like to join similar organizations in the world to commemorate this World Hemophilia day. In Tanzania, there are about 100,000 people diagnosed with hemophilia. Yet many remain undiagnosed today or are without access to care and treatment. The reality is that most people with hemophilia or other bleeding disorders do not receive adequate diagnosis, treatment, and management for their conditions, said Mark Skinner, World Federation of Hemophilia (WFH) president. This is important whether good treatment is already established but needs to be protected or where treatment needs to be improved. To learn more about hemophilia and what it is like to live with a bleeding disorder, visit www.wfh.org/whd/en. On World Hemophilia Day, help us Close the Gap. 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 persons bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. 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 while bleeding into major organs, such as the brain, can cause death. The Objective of our Society is to have a functioning treatment center, access to drugs or clotting factors and home therapy or independent infusions. Tanzania with more than 44 Million population is estimated to have more than 4,000 hemophiliacs. About the World Federation of Hemophilia (WFH) For 50 years, the World Federation of Hemophilia, 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 118 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.

Society members at Muhimbili meeting

For more information please contact: Dr. James Rwehabura (jrwehabura@hotmail.com), Dr Abel Makubi (makubi55@yahoo.co.uk), Dr Stella Rwezahura (starwezy@yahoo.com) and Richard Minja (0754 541517- richardmazingira@yahoo.co.uk)

Dr. Abeli Makubi on Awareness creation mission at Bugando Referral Hospital, Mwanza.