Constructing and performing the category of "rare disease": Multi-sited ethnography within some patients and relatives' organizations in Belgium

Patients and relatives' organizations that aim at improving the quality of life of people affected by "rare diseases as a whole" abound worldwide. Such diseases are defined by a prevalence rate of less than one person in 2000 in the European Union as well as by certain characteristic situations and experiences faced by patients and their relatives, e.g. diagnostic and therapeutic wandering. Drawing on a multi-sited ethnography conducted in Belgium, this communication questioned the categorization work (Bowker & Star, 2000) operated by an organization of this sort in order to construct and perform a univocal "rare diseases" category. It particularly focused on the ways in which patients and relatives' narratives of lived experiences with a rare disease constitute some collective resources to such a categorization work, tending to encompass the multiplicity of diseases and experiences in order to form "a single front" and speaking from "a single voice" to publicize their claims. Moreover, the communication interrogated the articulation between the singularity of patients and relatives' narratives and the collective logic they reflect (Douglas, 1986). How are rare diseases-related experiences exchanged within patients and relatives' organizations? How are they aligned to become collective resources? What are the elements that make sense and what, conversely, is lost in this passage from the singular to the collective? What are the relationships between the narratives of patients and relatives and the wider social, political and medical contexts in which they are embedded?