Background: This article presents an analysis of the current state of studies carried out in the world and in the country on orphan and hematological diseases and their relationship with health literacy.
Aims: Its objective is to analyze the situation of hematological orphan diseases at the international, national and local level, in order to build bases for new lines of research and design of strategies that allow progress in care models and health literacy levels
Methods: It was established that a high number of studies aim to make visible and analyze the reality in the care of orphan diseases and the efforts to improve the quality of life of the patient and her family. .
Results: The review of documents and the analysis of their approaches, methodologies and theoretical frameworks, indicates that the research trend is quantitative, with descriptive analysis and the use of general care guidelines as a result of the consensus of experts or of public consultations carried out.
Conclusion(s): It was found that government entities generate the directives and non-governmental entities support activities aimed at improving comprehensive care for patients with orphan diseases. Documents related to hematological orphan diseases and health literacy are scarce and therefore become a source of interest for future research.
