For World Hemophilia Day, focus is on early, accurate diagnosis
Day of advocacy and awareness is April 17
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World Hemophilia Day, an annual effort to raise awareness of hemophilia and other bleeding disorders, is on April 17, and this year, the focus is on the importance of a prompt, accurate diagnosis as a key step toward achieving good health for people living with hemophilia.
“This year’s theme for World Hemophilia Day — diagnosis as the first step — highlights a crucial truth that an accurate and timely diagnosis is important in helping individuals with bleeding disorders thrive,” Dan Kelsey, CEO of the Hemophilia Federation of America (HFA), told Hemophilia News Today.
Last year’s event focused on the experiences of women and girls with bleeding disorders.
Advocacy organizations are gearing up for the day with efforts to raise awareness. The World Federation of Hemophilia (WFH) has created a range of online resources, including an advocacy toolkit, an info sheet, and a template letter to government officials. The WFH is also encouraging people living with bleeding disorders to share their stories online, and on April 17, the group is leading an annual effort to light up monuments red worldwide.
Hemophilia encompasses several disorders characterized by a deficiency in clotting factors, proteins required for blood to clot properly. Without enough working clotting factors, people with hemophilia are prone to symptoms such as abnormally easy and prolonged bleeding.
Treatments can help, but many people go undiagnosed
A range of hemophilia treatments can help patients manage bleeding and other symptoms, but people can’t access care if they don’t know that they have the condition. The WFH estimates that more than three-quarters of people with hemophilia have not been diagnosed. That’s why quickly getting an accurate diagnosis is seen as a crucial aspect of care for advocacy groups like the WFH and HFA.
“Advocating for an early diagnosis has been one of the key goals of HFA,” Kelsey said, noting that the importance of diagnosis will be a central theme of the HFA Symposium, which will take place April 16-19 in New Orleans.
Staffers at the event “will be wearing red to raise awareness,” Kelsey said. “By raising awareness, we can help ensure earlier diagnoses and better outcomes for our entire community.”
As part of the lead-up to World Hemophilia Day, Robyn Ford Kebede, the HFA’s education manager, spoke to the Harris County, Texas, Commissioners Court about the importance of bleeding disorder awareness.
“I am proud to represent HFA here in my own county, and grateful for the opportunity … for using this platform to raise awareness for special conditions, such as bleeding disorders,” Kebede said in a federation press release.
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