The book “A Flor da Pele: lives and epidermolysis bullosa” was released, at the XVI Brazilian Stomatherapy Congress, written by two professors linked to MDH. Angela Bocara and Suzana Ribeiro together with nurse Luciana Mendes came together to develop a project with associations of people with Epidermolysis Bullosa – EB. The project that uses the book as a bibliographical production interviewed people with and caregivers of people with EB and had financial support from industries, manufacturers of dressings and medicines for care aimed at caring for these people.

The project aimed to develop public policies and democratize access to treatments and the possibility of living well, which is a contemporary challenge., proposed by legislation and by our society for more than 30 years, If we adopt as a framework the Constitution of 1988. Especially given the evolution of technologies and products developed for the care of people. For so much, the initiative was established to listen to the life stories of these people, starting a movement to expand access and knowledge about care and treatments. The knowledge built in dialogue with the people interviewed by this project made it possible to recognize and evaluate the variables involved, highlighting possibilities for improving publicity policies on issues relating to EB in Brazil.