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"Rarity": a relevant category for the social sciences of health? - Université de Rouen Normandie - deadline (proposal) before 15 10 2024

Online 02 07 2024

(Calenda ad 1174595)

The "rarity" of diseases, or disabilities, is a recently constructed category. It makes it possible to bring into existence pathologies which, because of their low incidence, are marginalized by public health policies structured around epidemiological prioritization. Given the clinical and experiential diversity of these diseases, we propose to question the relevance of this category for the social sciences. To what extent do these rare diseases correspond to singular social realities? How is the category of rare disease constructed, delimited and mobilized? Do rare diseases pose specific problems for policies, organizations and professional practices? Despite their heterogeneity, do they produce recurring patterns of experience? Do they give rise to specific forms of associative mobilization?