ITINERÁRIO TERAPÊUTICO E CONSTRUÇÃO DE UM PROJETO TERAPÊUTICO SINGULAR EM REDE PARA UM CASO RARO DE SÍNDROME DE PRADER-WILLI: RELATO DE EXPERIÊNCIA

This study examines the development of a Singular Therapeutic Project (PTS) for a rare case of Prader-Willi Syndrome (PWS) within Brazil’s Unified Health System (SUS), emphasizing intersectoral coordination among primary care, specialized services, and education. It is a qualitative experience report based on the follow-up of a 13-year-old adolescent with PWS, utilizing field diaries, multiprofessional meetings, and collaboration with genetics and the Child Psychosocial Care Center (CAPSi). Results revealed weaknesses in health regulation (delays in accessing geneticists), dysfunctional family dynamics (maternal permissiveness exacerbating obesity), and a late diagnosis after years of navigating multiple services. The PTS implementation addressed care fragmentation through school adaptations (specialized chair, monitor), psychological support for the family, and prioritizing informal contact-based workflows. The study concludes that the PTS, combined with a broadened clinical approach, effectively coordinates care networks for complex cases, reinforcing Primary Health Care (PHC) as the cornerstone of care coordination. It underscores the need for integrated information systems and training in public health. This work provides a practical model for humanizing care and advancing equity in SUS.