The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research
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.
|Date of creation:||May 2012|
|Contact details of provider:|| Postal: 60 boulevard Saint Michel, 75272 Paris cedex 06|
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Web page: http://www.csi.mines-paristech.fr/
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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, vol. 62(3), pages 577-590, February.
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