The project aims to study rare diseases in Brazil, exploring aspects such as epidemiology, diagnosis, treatment and costs, in line with the National Policy for Comprehensive Care for People with Rare Diseases. The initiative seeks to establish a National Rare Disease Network that will include hospitals and neonatal screening services. Data collection will be systematic and standardized, with a focus on identifying gaps in research and management. Activities include expanding the collaborative network, continuing education, mapping the rare disease scenario, strengthening partnerships and promoting equal access to digital health technologies. The aim is to provide a more integrated and efficient management of rare diseases in Brazil, improving governance and health practices. Health focus areas include maternal and child health, health promotion, and chronic conditions and disabilities.