Today on Rare Disease Day, My Life, Our Future, a national program founded by leaders in the bleeding disorder community, including Bloodworks Northwest, the American Thrombosis and Hemostasis Network, the National Hemophilia Foundation and Bioverativ Inc., opened the largest research repository of its kind in the world to scientists. The My Life, Our Future Research Repository is a collection of genetic data and blood samples that are linked to phenotypic data from more than 5,000 people in the U.S. with hemophilia, a rare disorder that impairs the ability of one’s blood to clot. The My Life, Our Future Research Repository will allow researchers to advance the scientific understanding of the disorder, including genetic differences that affect bleeding severity and reaction to certain treatments.
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326 days ago by
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