New Delhi: World Haemophilia Day is observed worldwide on April 17 annually to increase awareness of haemophilia, Von Willebrand disease, and other inherited bleeding disorders. Von Willebrand disease is a blood disorder in which the blood does not clot properly.
This year’s theme for World Haemophilia Day aims to raise awareness of haemophilia and other inherited bleeding disorders, and bring them to the attention of policymakers.
What Is Haemophilia?
Haemophilia is a sex-linked recessive disease, in which a single cut in an affected individual will result in non-stop bleeding. It is a disease which shows its transmission from an unaffected carrier female to some of the male progeny.
A sex-linked disease is one which is passed down through families through one of the X or Y chromosomes, which are sex chromosomes. Sex-linked recessive diseases most often refer to X-linked recessive diseases. In these diseases, a genetic trait or condition is passed down from parent to child through mutations in a gene on the X chromosome. Since males have only X chromosome, a mutation in the copy of the gene on the single X chromosome causes the condition.
World Haemophilia Day: History
In 1989, the World Federation of Haemophilia (WFH) chose April 17 as the day to bring the community together in honour of WFH founder Frank Schnabel’s birthday. Therefore, World Haemophilia Day was celebrated for the first time on April 17, 1989.
The WFH was founded in 1963 by Frank Schnabel. He was a Canadian businessman born with Haemophilia A, which is one of the three types of Haemophilia.
Haemophilia A is caused due to low levels of blood clotting factor VIII. Approximately 85 per cent of haemophiliacs have type A disease.
Schnabel believed that patient organisations can be much more effective, and can do more to represent the interests of people living with bleeding disorders, if they worked together, according to the official website of WFH.
On June 25, 1963, the first WFH Congress was held in Copenhagen, Denmark. Representatives from 12 countries attended the WFH Congress. The WFH, along with other organisations, represents the interests of people with haemophilia and other inherited bleeding disorders in 147 countries.
World Haemophilia Day: Significance
World Haemophilia Day is observed every year on April 17 to ensure increased awareness of haemophilia and other inherited bleeding disorders because this will lead to better diagnosis and better access to care for the millions who remain without treatment, according to the Haemophilia Foundation Australia, a WFH member organisation.
The WFH estimates that over 75 per cent of people living with haemophilia worldwide have not yet been identified and diagnosed.
World Haemophilia Day is dedicated to educating people about haemophilia and other inherited bleeding disorders in order to improve and sustain care for people with inherited bleeding disorders around the world.
The WFH works in partnership with healthcare providers, governments, and its global network of national member organisations (NMOs) in 147 countries, and provides them with the knowledge and tools needed to identify, support, and treat people living with bleeding disorders in their communities. Together, these organisations also promote global advocacy and collaboration to achieve their common goals.
World Haemophilia Day 2022: Theme
This year’s theme for World Haemophilia Day is “Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy”.
The theme signifies that by raising awareness and bringing Haemophilia and other inherited bleeding disorders to the attention of policymakers, the world can increase sustainable and equitable access to care and treatment.
On the occasion of World Haemophilia Day, the WFH has urged landmarks all over the world to Light it Up Red. The Light it Up Red landmarks include the nations of Argentina, Australia, Canada, England, India, Taiwan, and the United States.
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