LEADER 04413nam 22006375 450 001 9910988295603321 005 20250319115247.0 010 $a9789819620081 010 $a9819620082 024 7 $a10.1007/978-981-96-2008-1 035 $a(CKB)38011751100041 035 $a(DE-He213)978-981-96-2008-1 035 $a(MiAaPQ)EBC31978593 035 $a(Au-PeEL)EBL31978593 035 $a(EXLCZ)9938011751100041 100 $a20250319d2025 u| 0 101 0 $aeng 135 $aur||||||||||| 181 $ctxt$2rdacontent 182 $cc$2rdamedia 183 $acr$2rdacarrier 200 14$aThe Social Life of Rare Disorders /$fby Caroline Huyard 205 $a1st ed. 2025. 210 1$aSingapore :$cSpringer Nature Singapore :$cImprint: Palgrave Macmillan,$d2025. 215 $a1 online resource (IX, 287 p.) 311 08$a9789819620074 311 08$a9819620074 327 $aIntroduction -- 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. 330 $aThis is an exciting book that takes a sociological and hermeneutical perspective on ?rare diseases?. -- Jeannette Pols, Professor Anthropology of Everyday Ethics, University of Amsterdam, The Netherlands This book offers a valuable overview of the history of rare diseases and the lived experience of people with a rare disease. -- Ma?gorzata Rajtar, Head of the Center for Social Research on Rare Diseases, Institute of Philosophy and Sociology of the Polish Academy of Sciences, Poland 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. The book shows that public authorities had a much greater role than biomedicine in turning rare disorders into a public health problem. A comparison of patients' experiences of 6 rare diseases as well as the activities of 8 associations in France underlines the importance of isolation and care for patients on the one hand, and the role of stakeholders? participation for associations on the other hand. This book is essential reading for researchers and students interested in contemporary healthcare systems and topics related to public policies on emerging issues, the industrialisation and regulation of medicine, the concept of care, and the governance of patient organisations. Caroline Huyard is a sociologist. She is a tenured researcher (Chargée de Recherches) at the Centre National de la Recherche Scientifique (CNRS) and the University of Lille, in France. 606 $aSocial medicine 606 $aMedical policy 606 $aMedical anthropology 606 $aScience$xSocial aspects 606 $aHealth, Medicine and Society 606 $aHealth Policy 606 $aMedical Anthropology 606 $aMedical Sociology 606 $aScience and Technology Studies 615 0$aSocial medicine. 615 0$aMedical policy. 615 0$aMedical anthropology. 615 0$aScience$xSocial aspects. 615 14$aHealth, Medicine and Society. 615 24$aHealth Policy. 615 24$aMedical Anthropology. 615 24$aMedical Sociology. 615 24$aScience and Technology Studies. 676 $a306.461 700 $aHuyard$b Caroline$4aut$4http://id.loc.gov/vocabulary/relators/aut$01456560 801 0$bMiAaPQ 801 1$bMiAaPQ 801 2$bMiAaPQ 906 $aBOOK 912 $a9910988295603321 996 $aThe Social Life of Rare Disorders$94348935 997 $aUNINA