Speak out: Create Change by marking World Haemophilia Day
Speak out: Create Change by marking World Haemophilia Day on April 17
Christchurch, 17 April 2014 - An estimated 6.9 million people have a bleeding disorder, yet 75 percent of them don’t know it. Every year on April 17, World Haemophilia Day is observed around the world to increase awareness of haemophilia 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.
In 2014, World Haemophilia Day will focus on encouraging the global bleeding disorders community to Speak out. Create change. This year we are making a particular effort to reach out to young members of the community so as to promote their participation and to develop strong leadership. We want our young members to feel inspired to assume key roles in building and supporting the bleeding disorder community.
World Haemophilia Day provides a unique opportunity for our community to connect locally, and globally, and to take action. The Haemophilia Foundation of New Zealand Inc. (HFNZ) is taking the opportunity to launch a new website (www.haemophilia.org.nz) to make it easier to find out information about bleeding disorders and HFNZ events, such as the upcoming Youth Leadership Weekend.
For World Haemophilia Day 2014, HFNZ are also will be organizing a number of local activities for members, including an awareness booth at the night market in Hamilton on 17 April.
In New Zealand, there are around 430 people diagnosed with haemophilia and 200 with von Willebrand disorder. HFNZ’s members are all unique but they have one thing in common – being part of the bleeding disorder community. HFNZ creates ways to unify this community and assist those affected by bleeding disorders.
Join the international bleeding disorders community on April 17 to mark World Haemophilia Day. Speak out: Create change.
To learn more about haemophilia and other inherited bleeding disorders, visitwww.haemophilia.org.nz
haemophilia and other bleeding disorders
Haemophilia, von Willebrand disorder, 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 haemophilia 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 Haemophilia Foundation of New Zealand Inc.
HFNZ is a charitable organisation dedicated to improving the lives of all people with haemophilia, von Willebrand disorder and related disorders and their families/whanau. Established in 1958, they provide support and education to people with bleeding disorders and their families in New Zealand and represent the haemophilia population to health services and the government. For more information on HFNZ and haemophilia visit www.haemophilia.org.nz