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|Press Release| World Hemophilia Day-2015 [PHPWS-NMO] (2015-04-17)
WORLD HEMOPHILIA DAY 2015::: Building a Family of Support on April 17, World Hemophilia Day PAKISTAN HEMOPHILIA PATIENTS WELFARE SOCIETY [PHPWS] PRESS RELEASE| Islamabad, Pakistan – 17 April 2015: Every year on April 17, World Hemophilia Day is observed around the world to increase awareness of hemophilia and other inherited bleeding disorders. This is a critical effort with an ultimate goal of ensuring better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment. A significant amount of care, support, and advocacy is done through extended families which come in many forms: medical teams, friends, and colleagues, as well as immediate relatives. These communities share the ability to come together in large numbers and help improve people’s lives. World Hemophilia Day provides an opportunity to talk to your extended family and friends, colleagues, and caregivers to raise awareness and increase support for those living with an inherited bleeding disorder. “We are all working together in the fight to raise awareness and improve care.” said Hassan Raza, President-NMO, PHPWS For World Hemophilia Day 2015, PHPWS through its provincial Chapters will be organizing multiple awareness raising events in various cities across the country. In Pakistan, there are approx. 2600 people diagnosed with hemophilia. These are less than 10% of the total estimated numbers of hemophiliacs who have hemophilia in Pakistan. “We all work together, support one another, and help out when someone needs it. That is what family does for one another.” Says Masood Fareed Malik, Community Activisit, PHPWS “Join the PHPWS family and be a part of our effort to improve the diagnosis and standards of treatment for those who need it.” 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 Pakistan Hemophilia Patients Welfare Society: For two decades, the Pakistan Hemophilia Patients Welfare Society® [PHPWS], a national level not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders in Pakistan. Established in 1995, it is a network of patient organizations serving in different parts of the country and has official recognition from the World Federation of Hemophilia [WFH] as National Member Organization [NMO]. Join us on Facebook: Pakistan Hemophilia Patients Welfare Society-NMO. Contact: PHPWS | info@hemophilia.org.pk | www.hemophilia.org.pk |
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