According to the World Federation of Hemophilia, World Hemophilia Day is about bringing the global bleeding disorders community together
Every year, on 17 April, World Hemophilia Day is observed across the world to raise awareness about hemophilia and other bleeding disorders.
Since 17 April also marks the birth anniversary of Frank Schnabel, the founder of the World Federation of Hemophilia, World Hemophilia Day is also held on the same date.
This year, however, the programme will have slight changes due to the novel coronavirus pandemic. All the activities and programmes will be conducted virtually because the pandemic is still raging across many countries.
What is Hemophilia?
Hemophilia is a medical condition in which blood’s ability to clot is severely curtailed, which causes one to bleed profusely even from a small injury.
The hereditary lack of a coagulation factor, most commonly factor VIII, is said to be the primary reason behind this condition.
Theme for this year
Adapting to change: sustaining care in a new world is this year’s theme. The day is about bringing together the global bleeding disorders community. At a time when coronavirus pandemic has had a major impact on people with a bleeding disorder, the objective has never been more important.
Cesar Garrido, President, World Federation of Hemophilia (WFH) said that the pandemic has made life challenging for people with a bleeding disorder but we can’t stop striving for treatment for all.
History and significance
Every year, since 1989, the entire bleeding disorders community reunites to celebrate advances in the treatment. The day is also used to raise awareness and bring understanding and attention to the issues related to proper care to the wider public.
According to a News18 report, the disease was first discovered in the 10th century and found mainly among males. It was back then called Abulcasis. But in 1937, the hemophilia genetic disorder was divided into two types namely A and B. Yet, no treatment was available for it.
The World Federation of Haemophilia (WFH) was established in 1963 and over the past fifty years, the WFH has worked globally to achieve “Treatment for All” people for both men and women with hemophilia and other inherited bleeding disorders, no matter where they live in the world.
Numerous global landmarks light themselves up in red on World Hemophilia Day to help bring attention to those affected by inherited bleeding disorders.
People can also participate in the movement by changing their profile pictures to red on social media platforms, primarily on Facebook, to spread awareness about Hemophilia.
More importantly, campaigns, conferences, and workshops are organised every year by communities and people to raise awareness and take the conversation forward about the disease.