EDUCAÇÃO EM SAÚDE E ESTRATÉGIAS DE PROMOÇÃO DA QUALIDADE DE VIDA EM PACIENTES COM DOENÇAS RARAS: UMA REVISÃO DE LITERATURA

• DOI: https://doi.org/10.22533/at.ed.982152529042

• Palavras-chave: “Educação em Saúde”, “Doenças Raras”, “Promoção da Saúde” e “Qualidade de Vida”.

• Keywords: “Health Education,” “Rare Diseases,” “Health Promotion,” and “Quality of Life.”

• Abstract: INTRODUCTION: Rare diseases are defined as conditions that affect up to 65 people per 100,000 individuals, according to the World Health Organization. OBJECTIVE: to analyze the contributions of health education and strategies to promote quality of life aimed at patients with rare diseases. METHODOLOGY: Narrative review of the literature carried out based on searches in the scientific databases PubMed®, SciELO, LILACS, ScienceDirect, MEDLINE and Web of Science, covering publications from 2019 to 2025. Descriptors in Portuguese, based on DeCS/MeSH, were used, namely: “Health Education”, “Rare Diseases”, “Health Promotion” and “Quality of Life”, crossed with the Boolean operator AND. RESULTS: Promoting the quality of life of people with rare diseases requires an integrated approach that combines health education strategies, psychosocial support, effective public policies and community actions. Throughout this narrative review, it became clear that knowledge about these conditions is still scarce among professionals and society, which contributes to late diagnoses, inadequate treatments, and increased suffering for patients and their families. CONCLUSION: In order to advance comprehensive care for rare diseases, it is essential to invest in professional training, ongoing educational actions, and structured public policies. Only with humanized, intersectoral, and person-centered care will it be possible to reduce inequities and ensure dignity for this historically invisible segment of the population.