The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research
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2012
- handle: 10670/1.axmcaq
- halshs: halshs-00702088
Ce document est lié à :
info:eu-repo/grantAgreement/EC/FP7/230307/EU/European Patient Organizations in Knowledge Society/EPOKS
info:eu-repo/semantics/OpenAccess
Mots-clés
patients' organizations rare diseases France Portugal hybrid collective model delegation model singularization-generalizationSujets proches
Patients' organizations Patient associations Patient organizations Pattern ModelCiter ce document
Vololona Rabeharisoa et al., « The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research », HAL-SHS : sociologie, ID : 10670/1.axmcaq
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Résumé
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.