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 an ultimate goal of promoting better diagnosis and access to care for the millions who have a rare bleeding disorder yet remain without treatment.
World Hemophilia Day in 2015 is focused on the global theme of Building a Family of Support; embracing and promoting the idea that family, in all forms, is critical to the care and support of those with a bleeding disorder.
The family is easily extended beyond those who are related by blood. Family can include all of those who participate in the care and support of a patient; caregivers, both institutional and individual, the global community of those with a bleeding disorder, and each individual who steps up to provide support and encouragement when needed. Most importantly, families all share the ability to encourage and advocate for people with bleeding disorders.
This support is an invaluable resource of strength and stability for the community but these connections are also critical in raising awareness and encouraging proper access to care.
World Hemophilia Day provides an opportunity to talk to extended family, friends, colleagues, and caregivers to raise awareness and increase support. It also provides an opportunity to approach new communities with information about what it is to live with a bleeding disorder. It will be easier than ever to connect with the global bleeding disorder family on the World Federation of Hemophilia (WFH) social media network this year and encourage your online community to join the global community.
World Hemophilia Day is also a good time to work with your children and relatives, to put together a family tree. It is a fun and educational process that encourages a discussion about the genetics of hemophilia and other bleeding disorders. The WFH has posted a guide on how to make a family tree at www.wfh.org/whd.
On this World Hemophilia Day, “We are all working together to raise awareness and improve care,” said 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 World Federation of Hemophilia will be hosting online activities for our community on our website and social media accounts, to follow Like us at www.facebook.com/wfhemophilia.