World Hemophilia Day will emphasize bleed prevention
World Federation of Hemophilia annual event is a call to action
With an emphasis on patient advocacy, supporters of World Hemophilia Day will participate in a variety of activities on April 17 to heighten awareness of the disease and other bleeding disorders that are thought to affect 1 in 10,000 people globally.
The World Federation of Hemophilia (WFH) organizes the annual event that targets the general public as well as lawmakers. scientists, industry representatives, and healthcare professionals.
In addition to calling attention to hemophilia and similar conditions, and the needs of their communities, the day is a call to action. The event’s theme this year is “Access for All: Prevention of bleeds as the global standard of care.”
“Building on last year’s theme, the call to action for the community in 2023 is to come together and advocate with local policy makers and governments for improved access to treatment and care with an emphasis on better control and prevention of bleeds for all people with bleeding disorders (PWBDs). This means the implementation of home-based treatment as well as prophylactic treatment to help those individuals have a better quality of life,” the WFH states on its World Hemophilia Day webpage.
The organization is offering participants downloadable, customizable materials, including a poster, logo, and banner, which are available in English, French, and Spanish. It also is providing social media resources, including a digital backdrop for Zoom calls, a Facebook frame, and social media graphic and cover photos. Suggested hashtags include #WHD2023 and #WorldHemophiliaDay.
WFH is providing a toolkit that offers tips on how supporters can engage their local governments, and provides a government petition letter template for advocacy use, and more. Also available is an advocacy toolkit that includes more resources for reaching out, such as event theme language translations.
The organization offers other ways to increase awareness, including sharing patient and caregiver stories about their journey or positive experiences with home-based or prophylactic treatment, hosting a webinar, forum, or town hall, posting event participation photos on social media, challenging coworkers or classmates to wear red — the color representing hemophilia — and going live on Facebook to talk about a bleeding disorder.
Light it Up Red!
The federation also offers a template letter for government participation in the organization’s returning Light it Up Red! campaign, which involves getting governments in countries globally to illuminate landmarks in red to increase bleeding disorder awareness.
“There is nothing more moving for someone in our community to hear about than a child with a bleeding disorder playing with friends, going to school, and simply enjoying a better quality of life because they have access to proper treatment. Controlling and preventing bleeds really is critical to a better quality of life,” Cesar Garrido, WFH’s president, said in an announcement on the website.
Participants are encouraged to share what they are doing to mark the day by sending an email to [email protected]
Elsewhere, Haemophilia Foundation Australia is marking the day by offering ways to get involved, including by sharing personal stories, getting landmarks bathed in red, and switching out social media photo frames.