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Researchers have identified the first gene mutation associated with a chronic and often fatal form of neuroblastoma that typically strikes adolescents and young adults. The finding provides the first clue about the genetic basis of the long-recognized but poorly understood link between treatment outcome and age at diagnosis. The study involved 104 infants, children and young adults with advanced neuroblastoma, a cancer of the sympathetic nervous system. Investigators discovered the ATRX gene was mutated only in patients age 5 and older. The alterations occurred most often in patients age 12 and older. These older patients were also more likely than their younger counterparts to have a chronic form of neuroblastoma and die years after their disease is diagnosed. To view Multimedia News Release, go to http://www.multivu.com/mnr/52992-st-jude-pediatric-cancer-genome-project-neuroblastoma-research

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. To view the multimedia release go to: https://www.multivu.com/players/English/8046151-national-hemophilia-foundation-my-life-our-future/