The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research

Vololona Rabeharisoa, Michel Callon, Angela Marques Filipe, João Arriscado Nunes, Florence Paterson and Frédéric Vergnaud
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Vololona Rabeharisoa: Centre de Sociologie de l'Innovation, Mines ParisTech
Michel Callon: Centre de Sociologie de l'Innovation, Mines ParisTech
Angela Marques Filipe: BIOS, London School of Economics and Political Sciences
João Arriscado Nunes: Centre for Social Studies, University of Coimbra
Florence Paterson: Centre de Sociologie de l'Innovation, Mines ParisTech
Frédéric Vergnaud: Centre de Sociologie de l'Innovation, Mines ParisTech

No 26, CSI Working Papers Series from Centre de Sociologie de l'Innovation (CSI), Mines ParisTech

Abstract: Highlights the emergence of a "hybrid collective model" of collaboration between patients and experts through a systematic study in the field of rare diseases in France and Portugal, with attention to the reflexive work carried out by patients' organizations on the notion of rareness.

Keywords: patients’ organizations; rare diseases; France; Portugal; hybrid collective model; delegation model; singularization-generalization (search for similar items in EconPapers)
JEL-codes: I10 Z10 (search for similar items in EconPapers)
Pages: 41 pages
Date: 2012-05
New Economics Papers: this item is included in nep-hea
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Persistent link: https://EconPapers.repec.org/RePEc:emn:wpaper:026

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