The entanglement of scientific and political claims. Towards a new form of patients' activism

International audienceDrawing on fieldwork in four condition areas (rare diseases, childbirth, Attention Deficit Hyperactivity Disorder, and Alzheimer’s disease), thisarticle shows that patients’ organizations’ (POs) engagement with knowledge is neither limited to a set of diseases nor restricted to biomedicalknowledge. Their work on and with academic and experiential knowledge contributes to an understanding of their conditions and the problemsthey induce, and to the shaping of the causes they defend. This results in the production of new evidence for grounding research and healthpolicies in their condition areas. The authors propose the notion of “evidence-­‐based activism” to capture the centrality of knowledge activitiesin contemporary POs