What Is Hemophilia?*

  • Hemophilia is a rare genetic bleeding disorder that affects approximately one in every 10,000 live births. It’s estimated there are around 400,000 people with hemophilia worldwide.

  • Of these, 70% have little access or no access to care; only 115,000 have even been diagnosed.

  • Hemophilia is caused by a missing protein in the blood. Hemophilia causes prolonged bleeding, and if left untreated, leads to joint deformities, agonizing pain, brain damage and in some cases death.

  • Half of all people with severe hemophilia in developing countries die before age 10.

  • Hemophilia is easily managed with injections of commercial blood-clotting medicine called factor.

  • Only 25% of people living with hemophilia in the world have access to treatment. Without the access to treatment, joint disease can occur at a young age, mobility is painful and difficult and life expectancy is extremely low. With treatment, patients with hemophilia live relatively active, well-rounded lives.

Hemophilia in Nepal

  • Only 552 of the estimated 3,000 people with hemophilia are diagnosed.

  • The Nepal Hemophilia Society was founded in 1992.

  • Two central care units located in Central Kathmandu.

  • Six local chapters are located in different parts of Nepal.

  • Access to factor is limited and reliant entirely on international donations.

  • Prophylactic or preventative treatment is not available.

  • Save One Life offers direct, monthly financial aid to 118 families with hemophilia.

  • Five community members died in the 2015 earthquake; almost 60 lost all or parts of their homes.

  • Save One Life has been the only hemophilia organization to visit Nepal post-earthquake to assess the impact.

*Hemophilia statistics provided by World Federation of Hemophilia (WFH)