The Social Life of Rare Disorders
The Social Life of Rare Disorders
English | 2025 | ISBN: 9819620074 | 382 Pages | PDF EPUB (True) | 3 MB
English | 2025 | ISBN: 9819620074 | 382 Pages | PDF EPUB (True) | 3 MB
This book is the first comprehensive study of rare disorders from a historical, political, and social perspective. It is estimated that around 300 million people worldwide live with a rare disorder today. What do patients and associations concerned by one of the 7,000 known rare diseases have in common, and what does rarity mean to them? How did rare disorders become a mainstream category in public health policy? To answer these questions, Caroline Huyard traces the history, over more than 50 years, of medical treatments for one particular disease, and that of the orphan drug status in the United States and in Europe.