The book “Skin Flower: lives and bullous epidermolysis ”was released, at the XVI Brazilian Congress of Stomatherapy. Suzana Lopes Salgado Ribeiro joined 2 Researchers to develop a project with associations of people with Bullous Epidermolysis - EB. The project that has the book as bibliographic production interviewed people with and caregivers of people with EB and had the financial support of industries, dressings of dressings and medicines for care focused on the service of these people.
The project aimed to think about the difficulties of schooling and experience of people with EB. Also aimed to elaborate public policies and democratize access to treatments and the possibility of living well. for both, The initiative to hear the life story of these people were established starting a movement that for the expansion of access and knowledge about care and treatments. The knowledge built in dialogue with the people interviewed by this project allowed to recognize and evaluate the variables involved, highlighting possibilities for improving policies to disseminate issues related to EB, No brazil.
