Rare Diseases, Real Stories

By: UMass Chan Medical School
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  • Summary

  • 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: AdvancingTogether@umassmed.edu
    2024
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Politics & Government Science
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Episodes
  • Coming soon: Rare Diseases, Real Stories

    Coming soon: Rare Diseases, Real Stories
    Feb 3 2025
    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 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 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. 🎧 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: AdvancingTogether@umassmed.edu For updates and episode highlights, @UMassChan on Instagram, X, Bluesky and YouTube. On LinkedIn and Facebook, you can find us at UMass Chan Medical School.
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    2 mins
  • Catherine's story: Tay-Sachs disease

    Catherine's story: Tay-Sachs disease
    Feb 10 2025
    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 invasion, while her husband stayed behind to fight in the war. For the first nine months of her life Catherine developed as expected, but after symptoms arose and setbacks occurred, Catherine was diagnosed with Tay-Sachs disease, a fatal genetic disorder. Through an unlikely series of events, Catherine and her mother found themselves in the U.S., where Catherine became the final participant accepted to a UMass Chan gene therapy clinical trial for Tay-Sachs. Despite ongoing challenges, Tamara Radivilova’s resilience and love shine through as she fights for her daughter’s future. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: umassmed.edu/rarediseasesrealstories. To learn more about Tay-Sachs disease, patient advocacy and research, visit: UMass Chan Medical School  National Tay-Sachs & Allied Diseases Association Cure Tay-Sachs Foundation Blu Genes Foundation The Mathew Forbes Romer Foundation   🔗 Share Catherine’s story using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast  Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu
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    32 mins
  • Noa's story: Canavan disease

    Noa's story: Canavan disease
    Feb 10 2025
    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 disease, developed by researchers at UMass Chan Medical School. This episode explores Noa’s story, her parents' commitment to rare disease awareness and the hope innovative treatments provides. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: umassmed.edu/rarediseasesrealstories 💜 Learn more about Canavan disease: National Tay-Sachs & Allied Diseases Alliance, Inc. The Horea Gene Therapy Center at UMass Chan Medical School 🔗 Share Noa’s story using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast Interested in learning more about gene therapy research? Email us at: AdvancingTogether@umassmed.edu
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    24 mins

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