Remarkable Rare: Living with SGS

Welcome to the Remarkable Rare Podcast! Learn about the ultra-rare disease known as Shprintzen-Golderg Syndrome with less than 60 known patients worldwide and the complex journeys for rare disease patients and their families. In 7 episodes, you will hear from the many unique perspectives involved in the care and the important lessons they have to share with the world. 

Hosted by Kayla and Zhaohan, undergraduate students part of the Patient Advocacy Initiative Department at the University of Notre Dame.