‘Equitable access for all’ is theme of today’s World Hemophilia Day
WFH president: ‘Bleeding disorder’ means more than ‘male with hemophilia’
World Hemophilia Day is today, April 17, and this year’s chosen theme by the World Federation for Hemophilia (WFH) is “Equitable access for all: recognizing all bleeding disorders.”
On its website, the WFH called for moving toward “a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, age, or where they live.”
World Hemophilia Day was started in 1989 to raise awareness and understanding of hemophilia, along with other bleeding disorders, such as von Willebrand disease. April 17 was chosen in honor of hemophilia A patient Frank Schnabel, who was born on that day in 1942 and went on to found the WFH in 1963.
Hemophilia and other bleeding disorders are marked by problems with blood clotting, which results in excessive and prolonged bleeding episodes that can be life-threatening in some cases. A range of treatments are available to manage bleeding, but not everyone can access them, hence the focus of this year’s awareness day.
“At one time, when one said, ‘bleeding disorder’, people heard ‘male with hemophilia’. In the last few years, the world has started seeing that a bleeding disorder means much more. It’s hemophilia A and B, von Willebrand disease (VWD), and other conditions. It’s men, boys, women and girls. It’s the parents and the friends who support the person with a bleeding disorder,” Cesar Garrido, WFH’s president, said in a press release. “In short, ‘bleeding disorder’ means community — a community that deserves recognition, and one that needs our support. Please join us on April 17 to show the world that you care about equitable access for all.”
Spreading the word on WHD
The WFH is encouraging members of the bleeding disorders community to spread the word on social media using the hashtags #WorldHemophiliaDay, #WHD2024, and #LightItUpRed. Sample phrasings, along with a toolkit with images and resources, to share online are available.
The “Light It Up Red” campaign is also part of World Hemophilia Day, where landmarks worldwide, from across the U.S. to Qatar and Japan, will be illuminated as a show of solidarity with the bleeding disorders community. Supporters can also participate by wearing red and posting pictures of lit-up landmarks on social media.
The WFH also is encouraging efforts to spread advocacy within communities. It notes that World Hemophilia Day is a great time to get in touch with government officials and policymakers to make sure they are aware of these campaigns and letting them know that getting equitable treatments for people with bleeding disorders is a priority.
“A small personal note from someone from the community can often be the first step on a journey that can lead to major change,” the federation states. The WFH is providing a template for how to structure a message to a government representative as part of an advocacy toolkit that’s available on its website.
Other ways supporters can mark World Hemophilia Day include sharing a story about how their life or that of someone they know was affected by a bleeding disorder and read the stories of other people in the community. They may also consider organizing a community event, webinar, forum, or town hall. Participants can also show their support by making a donation.
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