Desafios da Atenção Primária no cuidado das pessoas com doenças raras no Brasil

Abstract

The Brazilian population has been experiencing changes in its demographic and epidemiological profile, where non-communicable chronic diseases (NCDs) have become highly significant. The impact of these diseases on people's lives is undeniable and represents a true challenge for society, particularly for the health and social assistance sectors. Within the chronic complex diseases broad spectrum of chronic diseases, there are complex chronic conditions (CCCs) or complex chronic diseases (CCD) and rare diseases (RDs). These condittions are characterized by their long-term effects, in some cases they afect all body systems and leading to a loss in quality and duration of life. In the field of Public Health, Primary Health Care (PHC) is the level of care that has essential requirements for assisting individuals with CCCs and RDs. PHC offers widespread service coverage across Brazil's vast territory, in addition to providing longitudinal and multidisciplinary care. As a working method, the integrative review was chosen, justified in this study by the need to consolidate and analyze the available knowledge in an area where scientific production is scarce and scattered. The primary objective was to analyze care management provided by PHC in Brazil, focusing on individuals with RDs and their families, seeking to discuss RDs within the context of PHC and share experiences that foster the training of other health professionals. It is concluded that conditions and opportunities must be provided for PHC professionals to work effectively with their populations, including individuals with rare diseases and their families.