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Going to NIH for Danazol protocol
Hi friends, I'm going to NIH Aug 9, 10th to see if I qualify for the Danazol protocol. Any advice? I go annually for my BMB and other testing there, wish the hotel, airfare, and food was paid for...whew, expensive trip!
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Linda, 47 yo, married, mother of a teen, moderate AA w/ TERC mutation (2007 NIH), Pulmonary Fibrosis 2010, was on Danazol study (Aug 2011-2013 & restarted 9/14/15), last transfusion May 2011. On Promacta now. Needing a double lung and stem cell transplant.
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