HUMANIZED CARE FOR PATIENTS WITH RARE DISEASES: PERSPECTIVES IN MEDICAL PRACTICE IN PUBLIC HOSPITALS

Abstract

The care of patients with rare diseases within the Brazilian public health system presents numerous challenges, from early diagnosis to continuous access to specialized treatments. Due to their low prevalence, these conditions often receive little attention in public policies and traditional medical education, contributing to the invisibility of these individuals within the healthcare system. In this context, humanized care emerges as an essential strategy to ensure dignity, qualified listening, and support for patients and their families. This article aims to discuss humanization practices directed at patients with rare diseases in public hospitals, analyzing how the bond between healthcare teams and patients can positively influence disease coping, treatment adherence, and quality of life. The methodology includes an integrative review of national and international literature, along with the analysis of accounts from healthcare professionals working in public hospitals. The data indicate that, even amid structural limitations and resource shortages, humanized care is possible through actions such as active listening, empathetic communication, psychosocial support, and respect for the uniqueness of each patient. The research reinforces the urgency of incorporating humanized practices in the care of rare diseases, as well as the need for continuous training of healthcare teams and increased investment in inclusive public policies.