The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research
AbstractHighlights 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.
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Bibliographic InfoPaper provided by Centre de Sociologie de l'Innovation (CSI), Mines ParisTech in its series CSI Working Papers Series with number 026.
Length: 41 pages
Date of creation: May 2012
Date of revision:
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More information through EDIRC
patients’ organizations; rare diseases; France; Portugal; hybrid collective model; delegation model; singularization-generalization;
Find related papers by JEL classification:
- Z10 - Other Special Topics - - Cultural Economics - - - General
- I10 - Health, Education, and Welfare - - Health - - - General
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- Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, Elsevier, vol. 62(3), pages 577-590, February.
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