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Drawing on ethnographic studies of the lived experiences of people with rare diseases, this volume critically examines rare, chronic diseases in the context of care, kinship, and technologies, providing in-depth analyses of local worlds that usually remain at the peripheries of medical anthropological inquiry.
Sommario
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
Info autore
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. Król is PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.Katarzyna E. Król is PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.Katarzyna E. Król is PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.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. Król is PhD student at the Graduate School for Social Research at the Institute of Philosophy and Sociology of the Polish Academy of Sciences.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.
