Description

Book Synopsis

Introduction.- Part I Birth of the Rare Diseases.- Wilson's Disease: Between Craftsmanlike and Industrial Medicine.- The Invention of Rare Diseases: Responding to the Problem of Orphan Drugs.- Part II What Does It Mean to Experience a Rare Disease?.- Experiencing Isolation.- Association as a Way Out of Isolation?.- Part III Small Groups, Big Challenges.- Who Runs the Associations? Beyond the PatientDoctor Divide.- Building a Therapeutic Toolbox.- A Fragile Coalition of Disparate Associations.- Conclusion.

The Social Life of Rare Disorders

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    A Hardback by Caroline Huyard

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      Publisher: Palgrave Macmillan
      Publication Date: 07/04/2025
      ISBN13: 9789819620074, 978-9819620074
      ISBN10:
      Also in:
      Health, illness or addiction: social aspects

      Description

      Book Synopsis

      Introduction.- Part I Birth of the Rare Diseases.- Wilson's Disease: Between Craftsmanlike and Industrial Medicine.- The Invention of Rare Diseases: Responding to the Problem of Orphan Drugs.- Part II What Does It Mean to Experience a Rare Disease?.- Experiencing Isolation.- Association as a Way Out of Isolation?.- Part III Small Groups, Big Challenges.- Who Runs the Associations? Beyond the PatientDoctor Divide.- Building a Therapeutic Toolbox.- A Fragile Coalition of Disparate Associations.- Conclusion.

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