World Hemophilia Day - Global Online Family Tree Project
Author: World Federation of Hemophilia (WFH) : Contact: www.wfh.org
Published: 2015-04-15 : (Rev. 2016-11-06)
Synopsis and Key Points:
World Hemophilia Day is observed on April 17th to increase awareness about hemophilia and inherited bleeding disorders.
This year, the World Federation of Hemophilia (WFH) encourages the global bleeding disorders community to "Build a Family of Support" by celebrating the many people who help and advocate for those living with hemophilia and other bleeding disorders.
Haemophilia (spelled hemophilia in North America), is a group of hereditary genetic disorders that impair the body's ability to control blood clotting, which is used to stop bleeding when a blood vessel is broken. Haemophilia A (clotting factor VIII deficiency) is the most common form of the disorder, present in about 1 in 5,000 - 10,000 male births. Haemophilia B (factor IX deficiency) occurs in around 1 in about 20,000 - 34,000 male births.
"Families come in many forms, but they all share the ability to support and advocate," said Alain Weill, WFH president.
"We all work together in the fight to raise awareness and improve care, which is why we're inviting the public to acknowledge and celebrate all the people who make up the care teams helping to advance the diagnosis and standards of treatment for those in need."
In honor of this year's World Hemophilia Day, the WFH launched a Global Family Tree online at www.worldhemophiliaday.org where the bleeding disorders community can post comments about the importance of their support networks.
From the site, as well as from their Facebook and Twitter pages, users can tell stories and post photos of people who help to make their lives better or about people living with bleeding disorders who have positively impacted them.
A significant amount of care, support and advocacy is done for these individuals through extended families, which come in many forms, including medical teams, friends and colleagues, as well as relatives. These support networks share in the ability to come together as a community to help improve people's lives.
"World Hemophilia Day provides the bleeding disorders community an opportunity to talk to their extended families, friends, colleagues and caregivers as a way to raise awareness and increase support for those living with an inherited bleeding disorder," Weill said.
"We want to encourage an open discussion that brings awareness to these communities and beyond."
WFH invites the bleeding disorders community to unite and show global support by participating in the following activities on April 17:
- Post a comment, photo or video about the importance of their support networks to WFH's Facebook page: facebook.com/wfhemophilia,
- Tweet or retweet messages about their support networks' using WFH's Twitter handle: @WFHemophilia,
- Illuminate homes, offices and front porches with a red light to show commitment to the cause and to raise awareness, and
- Reach out to hemophilia and bleeding disorder organizations to learn about what they're doing in local communities around the world to celebrate and recognize World Hemophilia Day.
To learn more about hemophilia and other inherited bleeding disorders, the WFH online Global Family Tree or other World Hemophilia Day activities, please visit World Hemophilia Day and the World Federation of Hemophilia online, where you can find additional support materials and informational resources.
These important World Hemophilia Day initiatives would not have been possible without the support of our sponsors Baxter, Bayer, Biogen, CSL Behring, Novo Nordisk, Precision BioLogic, and Sobi.
- 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.
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