In 2022, Peter and Maggie Dion were diagnosed with limb-girdle muscular dystrophy. There were no trials. Their parents, Joe and Courtney Dion of @DionFund, came to Washington to advocate for the reauthorization of the Pediatric Priority Review Voucher (PPRV) program, and the first trial started in 2025.

BIO's Chief Patient Advocate Michele Oshman joined the Dions for a keynote at the Rare Trials Summit. More from the keynote on http://Bio.News: https://bio.news/federal-policy/in-rare-trials-summit-keynote-bio-expert-highlights-lives-touched-by-pprv/