Rare Diseases, Real Stories Podcast by UMass Chan Medical School

Episodes 7

Avg. Duration 21m

Activity Dormant

Since Feb 2025

Latest Episode Feb 2025

Publishing Details

Schedule

Hourly

Format

Serial

Hosting

rss.libsyn.com

Contact & Outreach

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About This Podcast

Rare Diseases, Real Stories is a special podcast series that celebrates families who are transforming the world of rare diseases. In each episode, hear from parents about the challenges they face before and after their child is diagnosed, and the grief, strength, love and unwavering hope that guide them. Through their stories, you'll discover how their collaboration with UMass Chan Medical School researchers is driving innovation and fostering new rare disease treatments. Prepare to be moved, motivated and inspired by the real-life champions who are shaping the future of rare disease advocacy and research, one family at a time. Rare diseases, Real Stories is produced by the UMass Chan's Office of Communications. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at umassmed.edu/rarediseasesrealstories or wherever you get your podcasts. 🔗 Share the episodes using the following hashtags: #rarediseasesrealstories, #RareDisease, #podcast Interested in learning more about gene therapy research? Email us at: [email protected]

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Recent Episodes

S1E7 Courageous Parents Network

Feb 10, 2025 17m Transcript

In the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose. Blyth Taylor Lord started the…

S1E6 Jack's story: Hereditary spastic paraplegia type 4

Feb 10, 2025 17m Transcript

Seven-year-old Jack Laidlaw, the oldest of three boys, is upbeat and friendly to everyone he meets, according to his parents, Anna and Richard Laidlaw. But Jack faces challenges due to a rare…

S1E5 Raiden's story: UBA5

Feb 10, 2025 15m Transcript

Tommy and Linda Pham turned their heartbreak over their son Raiden's ultra-rare disease diagnosis, UBA5 disorder, into hope for others. There are only 30 known cases in the world, but the Phams'…

S1E4 Riaan's story: Cockayne syndrome

Feb 10, 2025 23m Transcript

Meet Jo Kaur and Richie DiGeorge, parents of Riaan, a vibrant 5-year-old boy who has Cockayne syndrome, a rare and debilitating genetic disease. In this podcast episode, Riaan's parents take…

S1E3 Noa's story: Canavan disease

Feb 10, 2025 23m Transcript

Four-year-old Noa Greenwood is an inspiration for families facing Canavan disease, a rare genetic disorder. In June 2022, she became the third child to receive a promising gene therapy for the…

S1E2 Catherine's story: Tay-Sachs disease

Feb 10, 2025 32m Transcript

Two-year-old Catherine Radivilova's story is as unlikely as it is amazing. While pregnant with Catherine, Tamara Radivilova and her son fled their home in Ukraine in the days following Russia's…

S1E1 Coming soon: Rare Diseases, Real Stories

Feb 03, 2025 1m Trailer

UMass Chan Medical School will launch Rare Diseases, Real Stories, an inspiring six-episode podcast series on Monday, February 10. Rare Diseases, Real Stories is a special podcast series that…