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Entanglements of Rare Diseases in the Baltic Sea Region

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Although rare diseases have captured public attention in recent decades, the lived experiences of people affected by these conditions remain on the periphery of medical anthropological inquiry. Focusing on Poland, Finland, and Sweden, and foregrounding notions of "rare" or "chronic" disease as an embedded category, this book critically analyzes entanglements between people and families with rare diseases and care practices that involve local healthcare policies, practitioners, and treatment modalities. Drawing on locally grounded case studies, Entanglements of Rare Diseases in the Baltic Sea Region constitutes a unique and important contribution to both global medicine and social science scholarship.
Malgorzata Rajtar is associate professor and head of the Rare Disease Social Research Center at the Institute of Philosophy and Sociology of the Polish Academy of Sciences. Katarzyna E. Krol is a PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.
Chapter 1: Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with Phenylketonuria Chapter 2: Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic Disease Chapter 3: Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary Perspectives Chapter 4: Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and Poland Chapter 5: Entangled and Layered Temporalities: Rare-disease Patients' Expectations about Clinical Gene Editing Chapter 6: Health Emigration in Rare Disease: A Case Study Chapter 7: "Are You a Disabled Person?" Disability and Rare Metabolic Disorders in Poland Conclusion: Rare Diseases and Cultures of Caring
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