Social Life of Rare Disorders

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 Patient-Doctor Divide.- Building a Therapeutic Toolbox.- A Fragile Coalition of Disparate Associations.- Conclusion.

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• Sistemas e serviços de saude
• Sociologia médica
• Doença e dependência: aspectos sociais

rarity;rare disorder;rare disease;orphan disorder;orphan illness;orphan drug;rare disorder organisation;rare disease organisation;patient organisation;patient association;sociology of health;coalition-building;Orphan Drug Act;health studies