Ezra Fineman

The Hyper IgM Podcast

Business EN ↓ Odcinki: 7

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.

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Autor

Ezra Fineman

Kategoria

Business

Strona podcastu

rss.com

Ostatni odcinek

12 kwi 2026

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Odcinki

Hyper IgM Podcast - Patient Voices - E7 - Marcus Gives an International Transplant Perspective! 12.04.2026 26:40

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/

Hyper IgM Podcast - Patient Voices - E6 - Chris Returns for an Update on his Gene Editing Journey! 05.01.2026 33:47

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/

Hyper IgM Podcast - E5 - Featuring Dr. Prockop, Renowned Pediatric Stem Cell Transplant Physician! 28.08.2025 34:47

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...

Hyper IgM Podcast - Patient Voices - E4 - featuring Chris, the FIRST HIgM gene editing candidate! 10.03.2025 29:49

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!

Hyper IgM Podcast - Patient Voices - E3 - Ezra Talks to Josh 28.08.2024 24:41

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...

Epiosde 2 - Ezra Talks to Simon - Hyper IgM Podcast - Patient Voices 24.05.2024 25:24

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.

Episode 1 - Ezra Talks to Idan - Hyper IgM Podcast - Patient Voices 11.04.2024 22:46

In the debut episode, Ezra sits down with 11-year-old Idan Zablocki from New York. Idan, diagnosed with X-linked Hyper IgM Syndrome, also known as CD40 Ligand Deficiency, at just 8 months old, faced a life-threatening battle with a rare pneumonia called Pneumocystis jiroveci pneumonia. This fungal infection of the lungs specifically targets individuals with compromised immune systems. Idan underwe...