Research Seminar April 23rd: Vololona Rabeharisoa - Making Rareness Count: Patient Activism and Politics of Knowledge in the War on Rare Genetic Diseases

Over the last three decades, the intervention of civil society organizations in scientific and technical activities and debates has attracted much attention in Science and Technology Studies. This phenomenon has been particularly well-documented in the domain of health and medicine, where patient groups are increasingly involving themselves into the production of knowledge on their conditions, and into the shaping of health issues they deem important to address at a collective level. This is notably the case in the area of rare genetic diseases, which is the focus of my presentation. My main argument is that for groups of patients and families, the production of experiential knowledge and the assertion of its relevance and legitimacy were, and are still decisive for making the rareness of their diseases count.