This article investigates how the engagement of patients' organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what...

The dynamics of causes and conditions. The rareness of diseases and patients' organizations' engagement in research in France and Portugal

Colloques et conférences

Vololona Rabeharisoa et al. (17 oct. 2012)

Colloques et conférences

International audience

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

Prépublication

Vololona Rabeharisoa et al. (2012)

Prépublication

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.