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


  • 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)


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.

Suggested Citation

  • Vololona Rabeharisoa & Michel Callon & Angela Marques Filipe & João Arriscado Nunes & Florence Paterson & Frédéric Vergnaud, 2012. "The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research," CSI Working Papers Series 026, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
  • Handle: RePEc:emn:wpaper:026

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    References listed on IDEAS

    1. 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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    More about this item


    patients’ organizations; rare diseases; France; Portugal; hybrid collective model; delegation model; singularization-generalization;

    JEL classification:

    • Z10 - Other Special Topics - - Cultural Economics - - - General
    • I10 - Health, Education, and Welfare - - Health - - - General

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