Use of real‐world evidence in regulatory decisions for rare diseases in the United States—Current status and future directions

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When I was born in 1968, my parents assumed everything was fine. They took me home and being her 1st child, my mom thought everything…
This is me, Joann. Living with a rare disease. Hiding for years in my DNA. It snuck up on me in the prime of my…
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Not long ago, Becky R. and her husband adopted a little baby girl, Mei Mei, from China. When she was first adopted, doctors were worried…
Hello everyone, my name is Sharon T., and my husband Dave has hypophosphatasia (HPP). He and our family have paid a price in our HPP…
The US Hypophosphatasia Foundation
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