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How would you handle a devastating, genetic disorder that impacts every area of your life? Could you live with monthly or even more frequent, pain crises that may require a hospital stay, blood transfusion or bone marrow transplant to temporarily halt the crisis? How would you maintain your work, your household and your family? What is it like to live with the continuous threat of stroke, kidney failure or liver failure? How would you cope with fear, isolation and lack of information in your community? Where would you look for help and support? What would you be willing to do to find a ra
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