Lambskin

This book aims to analyse the actors present in the field of rare disease care - the state, the market, the community - assessing the role of each and the relationships between them. It focuses above all on analysing civil society associations. The available approaches within the social sciences have the particularity of generalising the conclusions about rare disease civil associations from a European perspective and looking mainly at the large associations, which work from an advocacy perspective. This work aims to contribute to broadening this view by contrasting the European experience with the reality in Latin America, and specifically in Brazil. By carrying out a detailed observation of the work of rare disease associations and their relations with the state, the market and families, this research draws attention to the prevalence of an intervention centred on the search for medicines, in which market interests dominate.