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 global effort with the ultimate goal of ensuring better diagnosis and access to care for the millions of people who have a rare bleeding disorder, yet remain without treatment.
World Hemophilia Day 2015 focused on the theme, “Building a Family of Support,” embracing and promoting the idea that family, in all forms, is vital to the care and encouragement of those with a bleeding disorder.
The term “family” includes all who participate in the care and support of a patient. That means family applies to caregivers, both institutional and individual; the global community of those with a bleeding disorder; and each individual who steps up to assist and encourage when needed.
These varied family members are an invaluable resource of strength and support for the community. They are are also critical in raising awareness and encouraging proper access to care in their communities.
World Hemophilia Day provides an opportunity to talk to extended family members, friends, colleagues and caregivers to raise awareness and increase support. New communities can be introduced to information about what it is like to live with a bleeding disorder. This year it was even easier to connect with the global bleeding disorders family on the World Federation of Hemophilia (WFH) social media network and to rally your online community to join the global family.
World Hemophilia Day encouraged parents to work with their children and relatives to put together a family tree. It is a fun and educational process that helps initiate a discussion about the genetics of hemophilia and other bleeding disorders. The WFH has posted a guide on how to make your own family tree at: wfh.org/whd.
“We are all working together in this fight to raise awareness and improve care,” says Alain Weill, WFH president. “Join the WFH family, and be a part of the worldwide effort to improve the diagnosis and standards of treatment for those who need it.”
The WFH hosts online activities for our community on our website and social media accounts. Follow us at: facebook.com/wfhemophilia.