Multidisciplinary Support for Children With Genodermatoses in Brazil

Genodermatoses impose substantial psychosocial and functional burdens on affected children and their families, yet structured community-based support models remain underrepresented in the literature. We describe Casa Santa Teresinha, a Brazilian non-profit organization providing multidisciplinary care for children with genodermatoses and present a programmatic evaluation using the RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, and Maintenance). In 2025, the program engaged 103 patients and their families, delivering 4419 service encounters across psychology, social work, physiotherapy, genetic nursing, nutrition, and socioeducational activities. The model integrates individualized care planning, a genetic nurse acting as patient navigator, and innovative strategies to address social determinants of health, including rideshare-based transportation as a clinical safety measure. Strong engagement and sustained participation highlight the program's relevance in a socioeconomically vulnerable population. While formal outcome measures are being implemented, this evaluation demonstrates a scalable, community-based model that complements hospital care and may inform similar initiatives globally.

Abstract from PubMed