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|
|Date of revision:|
|Contact details of provider:|| Postal: 60 boulevard Saint Michel, 75272 Paris cedex 06|
Phone: + 220.127.116.11.92.88
Fax: + 18.104.22.168.56.28
Web page: http://www.csi.mines-paristech.fr/
More information through EDIRC
Please report citation or reference errors to , or , if you are the registered author of the cited work, log in to your RePEc Author Service profile, click on "citations" and make appropriate adjustments.:
- 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.
When requesting a correction, please mention this item's handle: RePEc:emn:wpaper:026. See general information about how to correct material in RePEc.
For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: (Florence Paterson)
If references are entirely missing, you can add them using this form.