Haemophilia is a genetic disorder that impairs the body’s ability to control blood clotting, leading to prolonged bleeding and easy bruising. People with haemophilia lack or have low levels of specific clotting factors, which can cause bleeding into joints, muscles, and organs, leading to pain, disability, and life-threatening complications.
World Haemophilia Day is celebrated every year on April 17 to raise awareness of the disease and the challenges faced by people living with haemophilia and other bleeding disorders. This article aims to provide a detailed overview of World Haemophilia Day, its history, key points, and how people can get involved in the global campaign to support those affected by the disease.
History of World Haemophilia Day
World Haemophilia Day was first observed in 1989, marking the anniversary of the World Federation of Hemophilia (WFH) founding on April 17, 1963. The WFH is an international non-profit organization that aims to improve the lives of people with haemophilia and other inherited bleeding disorders through education, research, and advocacy.
The WFH chose April 17 as the date for World Haemophilia Day to commemorate the birth of Frank Schnabel. The day aims to honour Schnabel’s dedication and vision to improve the lives of people with haemophilia and other bleeding disorders worldwide.
Key Points about Haemophilia
- Haemophilia is a rare, inherited bleeding disorder that affects around 1 in 10,000 people worldwide. The disease is caused by mutations in the genes that control the production of clotting factors, specifically factors VIII (8) or IX (9). There are two main types of haemophilia: A and B, depending on which clotting factor is deficient.
- People with haemophilia can experience spontaneous bleeding or prolonged bleeding after injury or surgery, leading to joint damage, chronic pain, and disability. The severity of haemophilia varies from mild to severe, depending on the level of clotting factors in the blood. Severe haemophilia can be life-threatening if not treated promptly.
- Haemophilia is a chronic condition that requires ongoing medical care, including regular infusions of clotting factor replacement therapy to prevent bleeding episodes. Treatment can be expensive and inaccessible in many parts of the world, leading to disparities in care and outcomes for people with haemophilia.
The Importance of World Haemophilia Day
World Haemophilia Day is an opportunity to raise awareness of haemophilia and other bleeding disorders and to advocate for better access to care, treatment, and support for those affected by the disease. The day aims to promote education, research, and advocacy to improve the lives of people with haemophilia worldwide.
The WFH leads the global campaign for World Haemophilia Day, with activities and events organized by national member organizations and community groups around the world.
How to Get Involved
There are many ways to get involved in World Haemophilia Day and support the haemophilia community. Here are some ideas:
- Wear red on April 17 to show your support for World Haemophilia Day
- Organize a local event or fundraiser to raise awareness and funds for haemophilia
- Join a haemophilia advocacy group or volunteer with a local organization
- Share your story or the story of someone with haemophilia to raise awareness and reduce the stigma
- Donate to a haemophilia charity or research organization to support efforts to improve care
- Participate in virtual events and activities organized by the WFH or local organizations on World Haemophilia Day
- Educate yourself and others about haemophilia and other bleeding disorders and how they can be managed and treated
- Support efforts to improve access to care and treatment for people with haemophilia, especially in underserved regions and countries.
By getting involved in World Haemophilia Day, we can make a difference in the lives of people with haemophilia and other bleeding disorders and help raise awareness and support for this important cause.
Conclusion
World Haemophilia Day is an annual global campaign to raise awareness of haemophilia and other bleeding disorders and advocate for better care, treatment, and support for those affected by the disease. By understanding the history and key points of haemophilia and getting involved in the campaign, we can support the haemophilia community and help improve the lives of people with this rare and challenging disease.
