World Hemophilia Day (WHD) is annually observed across the globe on 17 April to raise awareness about Hemophilia, an inherited bleeding disorder, and other bleeding disorders that prevent blood from clotting properly.
- WHD also serves as a platform to advocate for improved treatment and support globally.
- The annual observance of WHD is organised by the World Federation of Hemophilia (WFH).
Theme:
The theme of World Hemophilia Day 2024 is “Equitable access for all: recognizing all bleeding disorders”.
i.The 2024 theme emphasises recognising all bleeding disorders and promoting equitable access to care.
ii.The WFH envisions “Treatment for All,” ensuring universal access to care for people with bleeding disorders (PWBDs) irrespective of gender, age, or geographical location.
Objective:
i.Promote the crucial need for coordinated and concerted efforts towards achieving the WFH vision of “Treatment for all.”
ii.Draw attention to the key issues surrounding hemophilia and other bleeding disorders.
Background:
i.World Hemophilia Day was started in 1989 by the World Federation of Hemophilia (WFH).
ii.The 1st ever World Haemophilia Day was observed on 17 April 1989.
Why April 17?
i.The day marks the birth anniversary of Frank Schnabel, the founder of WFH.
ii.Frank Schnabel is a Canadian businessman born with severe hemophilia A.
Light it Up Red! Campaign:
i.Light It Up Red is a campaign championed by the WFH to help raise awareness of hemophilia.
ii.Lighting up a building or landmark in red in cities across the world will help bring attention to those affected by inherited bleeding disorders.
What is Hemophilia?
i.Hemophilia is a genetic bleeding disorder characterised by an insufficient clotting factor in the blood. It is considered a rare disease.
- A clotting factor is a protein in blood that controls bleeding.
ii.People with hemophilia (PWH) do not bleed faster than normal, but their bleeding lasts longer.
Note: The WFH estimates that over 75% of expected people living with hemophilia worldwide have not yet been identified and diagnosed.
Types of Hemophilia:
Hemophilia A (Classic Hemophilia): Lack of clotting factor VIII (factor eight). Incidence: about 21 in 100,000 males.
Hemophilia B (Christmas Disease): Lack of clotting factor IX (factor nine). Incidence: about 4 in 100,000 males. It is named after Stephen Christmas, the 1st person diagnosed with the condition in 1952.
Note: Hemophilia B is a less common type but the result is the same for people with hemophilia A.
Causes:
i.Hemophilia is usually inherited and results from mutations in clotting factor genes. Mutations prevent proper clotting protein function or result in its absence.
ii.The hemophilia gene is passed down from parent to child. The genes for hemophilia A and B are on the X chromosome.
- Hence hemophilia is called an X-linked disorder.
WFH 2024 World Congress:
i.WFH and La Federación Española de Hemofilia (Fedhemo) announced the WFH 2024 World Congress at the IFEMA Convention Centre in Madrid, Spain from April 21 to 24 2024.
ii.This event will be the most comprehensive international event on bleeding disorders in 2024.
- It will bring together the global bleeding disorders community, PWBDs, and other stakeholders in one place.
About World Federation of Hemophilia (WFH):
WFH is a non-profit organisation dedicated to improving and sustaining care for people with inherited bleeding disorders around the world.
President– Cesar Garrido (Venezuela)
Chief Executive Officer (CEO)– Alain Baumann
Headquarters– Québec, Canada
Established in 1963
