Entanglements of Rare Diseases in the Baltic Sea Region

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.

This edited collection is a welcome contribution to the social science and anthropological understanding of rare disease, rare disease communities, and national policies and practices. Its focus on the Baltic Sea region is original, and through a series of case studies, each chapter chronicles a local context which has global resonance. The book attends to a wide range of social science topics, including biosociality, relationships, diagnostic work, resilience, expertise, health tourism, stigma, identity and norms of rareness, illness, and disability. It also acknowledges the often difficult experiences of patients and patient communities. In doing so, it both recognizes, and represents, the nuances and complexities of rare disease. Overall, this edited collection provides a data-rich and comprehensive overview which benefits from a broad authorship, including academics across multiple disciplines, students, practitioners, and patient advocates.

• Chapter 1: Matriarchal Management, Expert Caregiving, and Intensive Mothering Among Mothers of Children with PhenylketonuriaChapter 2: Between Paternalism and Autonomy. Polish and Swedish Configurations of Caring for Children with Inherited Metabolic DiseaseChapter 3: Food as Medicine: Culinary Workshops for Patients with Rare Inborn Errors of Metabolism from Anthropological and Dietary PerspectivesChapter 4: Between Standard and Experimental: Knowledge Production and Tube Feeding Practices in Finland and PolandChapter 5: Entangled and Layered Temporalities: Rare-disease Patients’ Expectations about Clinical Gene EditingChapter 6: Health Emigration in Rare Disease: A Case StudyChapter 7: “Are You a Disabled Person?" Disability and Rare Metabolic Disorders in PolandConclusion: Rare Diseases and Cultures of Caring