Making Rareness Count: Patient Activism and Politics of Knowledge in the War on Rare Genetic Diseases
הציבור מוזמן לסמינר המחקר של מכון כהן להיסטוריה ופילוסופיה של המדעים והרעיונות באוניברסיטת תל אביב בתאריך 23.4.2018 בשעה 18:0, בבניין גילמן חדר 449.
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.