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The Story of Rory – Life and Death with CTNNB1 Syndrome – Patient Worthy

Summary by Patient Worthy
This is Rachel Heilmann‘s story – This is about how grief can fuel action, and why the smartest innovators are the ones with nothing left to lose and everything left to prove. If you want to understand where rare disease medicine is headed, who’s leading it, and why we can’t afford to wait – start […]
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Patient Worthy broke the news in on Friday, April 18, 2025.
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