A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber

Once Upon A Gene · Jul 13, 2023 · 38m

ONCE UPON A GENE - EPISODE 194

A Guide for Rare Disease Patient Advocacy Groups - Choosing and Designing a Patient Registry with Sophia Zilber

Sophia 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 HIGHLIGHTS

Can you tell us about yourself and your experience as a rare mom?

My personal experience with rare disease started 6 years ago when my daughter was born with Leigh's syndrome…