World Hemophilia Day is one of the biggest events of the year for the bleeding disorders community, and this year the World Federation of Hemophilia (WFH) coordinated another memorable day on April 17. This year’s theme was “Reaching Out: The First Step to Care.” For the WFH, that means looking at what we can do to develop outreach and identification campaigns to find people who have bleeding disorders and bring them into the caring fold of our community. This goal is immensely important to the WFH because many people around the world are suffering without even knowing the nature of their condition.
In addition to outreach and identification, World Hemophilia Day celebrated other endeavors led by the WFH. This includes programs to develop sustainable national care, the WFH Humanitarian Aid Program, national member organization support, and education and research support.
World Hemophilia Day is a unique opportunity to show the world that we all care and are working to support both patients and caregivers in our community.
As in past years, the WFH Light it Up Red! initiative was a key part of the World Hemophilia Day experience. Large and small landmarks around the world were lit in red to mark the day and increase awareness of bleeding disorders.
Online, the overwhelming worldwide participation on WFH social media platforms is proof of how our community comes together in a show of solidarity. Users shared their experiences, inspirational stories, photos and thoughts on how bleeding disorders have touched their lives. Hundreds of people took pictures at monuments and buildings lit up in red and then shared them around the world.
Once again this year, members of our community did more than simply post on Facebook and Twitter—they also contributed to worldhemophiliaday.org. This WFH microsite gives the people of our community a place to find out more about the event and—most importantly—share their thoughts and feelings with like-minded people in a safe environment. The ability to share is so important because it helps people with bleeding disorders feel like they are not alone—they are part of a large global community that shares many similar experiences, even if they do have a rare disease.
As special as World Hemophilia Day is, it is just one day of the year. At the WFH, we look forward to working every day to help identify new patients, create more awareness of bleeding disorders and provide support to improve the lives of those with bleeding disorders worldwide.
World Hemophilia Day 2019
Across the globe, organizations honored World Hemophilia Day with celebrations, educational activities and outreach. Below are just a few highlights.
The first meeting of the newly established national Hemophilia Coordination Committee took place in Bishkek. Discussion focused on how to improve the care and treatment for patients with hemophilia and other rare bleeding disorders.
The Haemophilia Foundation Western Australia organized a walk around the city of Perth for members to take pictures of the many landmarks lit up in red.
Evangeline Nana yaa Adjei of the Ghana Haemophilia Society led an outreach and identification campaign, followed by World Hemophilia Day celebrations.
In Tunis, the Association Tunisienne des Hémophiles and the Aziza Othmana Hemophilia Treatment Center organized a workshop on home treatment in the morning, followed by a visit by children to a laboratory to learn about different tests related to hemophilia.
In the Madeira region, the regional secretary of health participated in celebrations, including educational activities for children, family and health professionals.
The Guyana Hemophilia Society organized an educational awareness event at the Enmore Polyclinic for healthcare providers, patients and families.