Objective Develop a folder for caregivers of pediatric patients newly diagnosed with neurofibromatosis type 1 and for adolescents and young adults living with the disease. Methods Non-experimental descriptive study, using empirical action research. The process of creating the material occurred in three stages: identification of the problem; team discussion; and compilation of knowledge and production of the folder. Results The folder prepared presented basic information about the disease, with concepts and figures. It also warned the reader about searching for information on the internet, which may be inadequate, non-specific or without scientific evidence. Conclusion The use of health literacy as an education tool is reflected in decision-making about health and necessary medical care. The knowledge obtained from reading materials like this increases autonomy in relation to treatment and health decisions, as more reliable knowledge about the disease is acquired.