『The Hyper IgM Podcast』のカバーアート

The Hyper IgM Podcast

The Hyper IgM Podcast

著者： Ezra Fineman
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今ならプレミアムプランが3カ月 月額99円

2026年5月12日まで。4か月目以降は月額1,500円で自動更新します。

概要

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 マネジメント マネジメント・リーダーシップ 経済学 衛生・健康的な生活 身体的病い・疾患
エピソード
  • Hyper IgM Podcast - Patient Voices - E7 - Marcus Gives an International Transplant Perspective!

    Hyper IgM Podcast - Patient Voices - E7 - Marcus Gives an International Transplant Perspective!
    2026/04/12

    In episode 7 of the Hyper IgM podcast, Marcus, a 23-year-old from Sweden, joins us to share his unique journey with Hyper IgM. Marcus walks us through the effects Hyper IgM had on his family and friends, his relationship with his transplant doctor, an amusing sibling rivalry, and much more!

    The Hyper IgM Foundation: https://hyperigm.org/

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    27 分
  • Hyper IgM Podcast - Patient Voices - E6 - Chris Returns for an Update on his Gene Editing Journey!

    Hyper IgM Podcast - Patient Voices - E6 - Chris Returns for an Update on his Gene Editing Journey!
    2026/01/05

    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/
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    34 分
  • Hyper IgM Podcast - E5 - Featuring Dr. Prockop, Renowned Pediatric Stem Cell Transplant Physician!

    Hyper IgM Podcast - E5 - Featuring Dr. Prockop, Renowned Pediatric Stem Cell Transplant Physician!
    2025/08/28

    In episode 5 of the Hyper IgM Podcast, we change the focus from patients to doctors with this in depth interview of Dr. Susan Prockop, Program Director, Clinical and Translational Research; Outpatient Clinic Director, Hematopoietic Stem Cell Transplant Program; and Attending Physician, at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Ezra dives into what makes Hyper IgM Syndrome unique and often challenging to treat, promising new treatment options, and more! A big thank you to Blue Jay Advisory for sponsoring this episode 5! Enjoy the episode!

    The Hyper IgM Foundation: https://hyperigm.org/

    Blue Jay Advisory: https://bluejayadvisory.co.uk/

    Visit our YouTube for video versions of all our episodes!: https://www.youtube.com/@TheHyperIgMPodcast
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    35 分
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