Without FDA flexibility for rare diseases our daughter’s future is at risk 8 December 2025

https://rarerevolutionmagazine.com/without-fda-flexibility-for-rare-diseases-our-daughters-future-is-at-risk/ Meagan DeRaps shares her family's fight for their daughter, who has a rare disease (PDCD). A clinical trial medication has provided a vital lifeline for over three years, but the FDA's recent non-approval puts her future at risk. They urge the FDA for regulatory flexibility now.