My Life, Our Future is a U.S.-wide campaign that increases the understanding of hemophilia today, while helping to advance the breakthrough treatments of tomorrow. The program, which offers free genotyping to people with hemophilia A and B, as well as potential and confirmed carriers, is the largest genetic project ever conducted in hemophilia. It has created the world’s largest research repository of its kind – a collection of hemophilia data and samples for scientific study. This rich resource is now available to qualified scientists to increase our understanding of the disease and its complications, and potentially to develop new therapies.
At Bioverativ, we feel a responsibility to work together with the hemophilia community to create progress for patients, and we are proud to collaborate with leaders in this community, including the American Thrombosis and Hemostasis Network, Bloodworks Northwest, and the National Hemophilia Foundation, to offer this program and work together toward innovation.
Through genotyping – a blood test that identifies the genetic code responsible for an individual’s hemophilia – My Life, Our Future may provide patients with meaningful information, including a window into bleeding severity, clues to inhibitor risk, and steps toward adopting better treatments to manage care. We believe that genotyping is the key that may be able to unlock the mysteries of hemophilia, and that My Life, Our Future addresses a long-standing unmet need.
The My Life, Our Future Research Repository is the first initiative of its kind to link the genetic and clinical data of many people with hemophilia in the U.S., providing an unprecedented resource for researchers. Of the more than 6,600 people who have consented to participate so far, nearly 650 have been women and girls confirmed to carry a defective clotting factor gene, providing them with information to better manage their own health and aid in family planning decisions.