Brazilian Patient Organizations and Regenerative Medicine: Selective Comparisons with the Experience of the United Kingdom
Patient organizations have become a privileged locus to mediate relations in health care between state and society. This study analyses the roles played in regenerative medicine by Brazilian disease-specific and rare disease patient organizations and draws comparisons with those of the United Kingdom. International public engagement, citizen science, and patient-centered medicine policies are briefly discussed as well as the organizing models of patient associations, the relations of ‘biosociality’, and the construction of alternative‘civicepistemologies’ or tacit forms of knowing. Qualitative analysis is based on documentary information on the sector, secondary data from the organizations’ websites and 18 online interviews with representatives of Brazilian patient organizations. These data show that diseasespecific organizations mainly support patients and contribute to their treatments – an auxiliary operational model – and train members to become informed interlocutors – an emancipatory model. By contrast, most rare disease associations tend to form partnerships with researchers to reformulate treatments and impact public policy.
