• Cure Rare Disease: Continuing a Legacy

  • 2024/02/20
  • 再生時間： 36 分
  • ポッドキャスト

Cure Rare Disease: Continuing a Legacy

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  • サマリー

  • When he founded Cure Rare Disease in 2018, Rich Horgan was primarily focused on finding a treatment for his younger brother Terry, who had an ultra-rare form of Duchenne Muscular Dystrophy (DMD).

    Suffering from a disease that has no cure, Terry served as a “selfless, brave, and courageous” figure that Rich continues to draw inspiration from when seeking new, innovative solutions to treat this progressive, neurodegenerative condition.

    Join us for this interview as Rich discusses the origins of Cure Rare Disease, Terry’s ongoing legacy, the collaborative effort it takes to advance the drug development journey, the important role of the patient voice when developing treatments, and the future of rare disease research.

    Show Notes

    • What We Owe Terry Horgan: Reflections from Providers, Family, and Scientists
    • Letter From Terry's Parents
    • The Disruptors - Meet Rich
    • In Vitro Assays for Duchenne Muscular Dystrophy
    • 2022 World Congress Video
    • Duchenne Muscular Dystrophy Studies
    • Rare Disease Research for Drug Development
    • Scientific Collaboration Leads to Faster Drug Development
    • Cure Rare Disease

     

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あらすじ・解説

When he founded Cure Rare Disease in 2018, Rich Horgan was primarily focused on finding a treatment for his younger brother Terry, who had an ultra-rare form of Duchenne Muscular Dystrophy (DMD).

Suffering from a disease that has no cure, Terry served as a “selfless, brave, and courageous” figure that Rich continues to draw inspiration from when seeking new, innovative solutions to treat this progressive, neurodegenerative condition.

Join us for this interview as Rich discusses the origins of Cure Rare Disease, Terry’s ongoing legacy, the collaborative effort it takes to advance the drug development journey, the important role of the patient voice when developing treatments, and the future of rare disease research.

Show Notes

  • What We Owe Terry Horgan: Reflections from Providers, Family, and Scientists
  • Letter From Terry's Parents
  • The Disruptors - Meet Rich
  • In Vitro Assays for Duchenne Muscular Dystrophy
  • 2022 World Congress Video
  • Duchenne Muscular Dystrophy Studies
  • Rare Disease Research for Drug Development
  • Scientific Collaboration Leads to Faster Drug Development
  • Cure Rare Disease

 

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