The Role of Rare Disease Patients' Associations in Guaranteeing the Right to Health: strategies of interaction with the State
This dissertation deals with Rare Disease Patient Associations, seeking to understand what the main instruments and strategies are used by them to claim and guarantee access to treatment for patients. The period following the National Policy for Comprehensive Care for People with Rare Diseases, 2014, has a time frame. Some concepts that orbit around this theme are presented, such as: social movements, civil society organizations and their typologies; relationship between society and state; right to health; access to health; and judicialization.