• The Hyper IgM Podcast

  • 著者： Ezra Fineman
  • ポッドキャスト

The Hyper IgM Podcast

著者： Ezra Fineman
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  • 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.
    HyperIgM Foundation
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あらすじ・解説

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.
HyperIgM Foundation
エピソード
  • Hyper IgM Podcast - Patient Voices - E4 - featuring Chris, the FIRST HIgM gene editing candidate!

    Hyper IgM Podcast - Patient Voices - E4 - featuring Chris, the FIRST HIgM gene editing candidate!
    2025/03/10

    In Episode 4 of our Paitent Voices Hyper IgM Podcast, Chris shares revolutionary info about a new experimental treament plan for Hyper IgM Syndrome, gene editing, and much more! Enjoy the episode!
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    30 分
  • Hyper IgM Podcast - Patient Voices - E3 - Ezra Talks to Josh

    Hyper IgM Podcast - Patient Voices - E3 - Ezra Talks to Josh
    2024/08/28

    In Episode 3 of our Paitent Voices Hyper IgM Podcast, Josh shares his experience going through transplant and his significant post transplant complications involving a rare form of kidney cancer called Renal Cell Carcinoma (RCC). Josh, 16, lives in the U.K. and enjoys programming and gaming. All of our previous episodes are below and on our Hyper IgM Podcast YouTube Channel. Please don’t forget to subscribe and share. Enjoy!
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    25 分
  • Epiosde 2 - Ezra Talks to Simon - Hyper IgM Podcast - Patient Voices

    Epiosde 2 - Ezra Talks to Simon - Hyper IgM Podcast - Patient Voices
    2024/05/24

    In the second episode, Ezra sits down with 12 year old Simon from Utah who is currently living with Hyper IgM syndrom. Simon delves into all the challenges that comes with living with Hyper IgM.

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    25 分

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