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Podcast: Once Upon A Gene
Episode: A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber
Description: ONCE UPON A GENE - EPISODE 194A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia ZilberSophia Zilber has 20 years of experience in the pharmaceutical industry and she's a patient registry expert, volunteering her expertise to help the rare disease community in memory of her daughter who died from a mitochondrial disease called Leigh's syndrome. EPISODE HIGHLIGHTSCan you tell us about yourself and your experience as a rare mom?