Rare Diseases, Real Stories

Rare Diseases, Real Stories

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. ๐ŸŽง Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at umassmed.edu/rarediseasesrealstories or wherever you get your podcasts. ๐Ÿ”— Share the episodes using the following hashtags: #rarediseasesrealstories, #RareDisease, #podcast Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu

Episodes

February 3, 2025 โ€ข 1 min

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

Rare Diseases, Real Storiesย 

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Two-year-old Catherine Radivilov Read more

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February 10, 2025 โ€ข 23 mins

Four-year-old Noa Greenwood is an inspiration for

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February 10, 2025 โ€ข 23 mins

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 listeners on an emotional journey through their lives. They reflect on their darkest days, their resilience, their small victories and their enduring hope.ย 

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February 10, 2025 โ€ข 15 mins

Tommy and Linda Phamย turned their heartbreak over their son Raiden's ultra-rare disease Read more

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February 10, 2025 โ€ข 17 mins

Seven-year-old Jack Laidlaw, the oldest of three boys, is

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February 10, 2025 โ€ข 17 mins

In the final episode of Rare Diseases, Real Stories

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