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Reply to "DOGE at NIH"
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[quote=Anonymous]I heard about this from a friend who is very involved in rare disease advocacy. She has two kids with very fragile health from familial chronic pancreatitis. It killed their father before they knew the kids would be affected. Both kids (17 and 24) have had TPAIT procedures--pancreas removed and islet cells transplanted into liver, both have very very hard to manage diabetes and are often hospitalized. Local news featured a guy with a form of muscular dystrophy and his mom, who are also very involved in advocacy, and talking about people in research trials being delayed or the trials even being disrupted which affects validity of research results. I also learned that 1 out of 10 Americans has a rare disease, which I had no idea is the case. [/quote]
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