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The Hyper IgM PodcastAuthor: Ezra Fineman
In the world of rare diseases, amplifying patient voices is crucial for empowering others to make informed treatment decisions and for providing insights to healthcare professionals and researchers about the patient experience and its impact on quality of life. With conditions like Hyper IgM Syndrome, a rare immune deficiency affecting one in a million individuals, the majority of those affected are children. Yet, narratives in the pediatric rare disease realm often stem from the perspectives of parents, medical professionals, or adult survivors. Breaking this mold, the Hyper IgM Foundation has launched an innovative podcast, where children affected by X-Linked Hyper IgM Syndrome share their own stories. Led by Ezra Fineman, a 15-year-old high school freshman and two-time recipient of a hematopoietic stem cell transplant due to Hyper IgM Syndrome, this podcast offers a fresh format. Here, young patients interview one another, providing intimate and informative conversations about their experiences with Hyper IgM Syndrome and life with a rare disease. This approach offers a unique glimpse into the patient journey from the perspective of pediatric patients themselves. Language: en Genres: Business, Health & Fitness, Medicine, Non-Profit Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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Hyper IgM Podcast - Patient Voices - E6 - Chris Returns for an Update on his Gene Editing Journey!
Episode 6
Sunday, 4 January, 2026
In episode 6 of the Hyper IgM Podcast, Chris returns to share an update on his remarkable journey as the first patient to undergo gene editing therapy for Hyper IgM Syndrome. He discusses hospital life, the emotional and physical challenges faced during his stay, and much more! Episode 4: https://www.youtube.com/watch?v=lx19vdr07b4&t=1188s The Hyper IgM Foundation: https://hyperigm.org/
