Our community
Nepal Hemophilia Society is a community of people with haemophilia, parents, clinicians and volunteers. It was founded in 1992. It is a national member organization of the World Federation of Hemophilia and a member of the National Federation of the Disabled Nepal.
The vision is comprehensive care of haemophilia for living a life with dignity. The mission is to provide haemophilia care and treatment services so people with haemophilia can recover toward ordinary health. That work is practical: registration, information, chapter links, and advocacy with government.
NHS has said publicly that many more people in Nepal are likely to have a bleeding disorder than the number already diagnosed and registered. Finding them is part of the mission. A bruise that does not make sense, or a boy with a swollen knee and an uncle who bled, is a reason to test.
What members say this community is for
- A family that finally has a name for the bleeding, and a person to call who has heard the story before.
- A young person who stays in school because a teacher was told what a joint bleed is.
- A chapter volunteer who helps a new family reach Kathmandu for the first assay, then helps them go home with a plan.
These are the kinds of stories shared at World Hemophilia Day and at the March 2024 advocacy meeting in Kathmandu. They are not case reports. Medical details stay with the centre.
