The bill establishes the Florida Institute for Pediatric Rare Diseases within the Florida State University College of Medicine, aimed at improving the quality of life and health outcomes for children and families affected by rare diseases. The institute's goals include conducting research, developing diagnostic tools, providing clinical services, educating healthcare professionals, and fostering collaborations with other institutions. Additionally, the bill mandates the creation of the Sunshine Genetics Pilot Program, which will offer newborn genetic screening, including whole genome sequencing, for a period of five years. Participation in the program will require parental consent, and the institute will maintain a secure database for data collection and sharing.
Furthermore, the bill establishes the Sunshine Genetics Consortium to facilitate collaboration among clinical and academic professionals in genetics, aiming to advance research and education in the field. The consortium will be overseen by a board that includes representatives from various medical institutions and will report on its activities annually. The implementation of the act is contingent upon available appropriations, and it is set to take effect on July 1, 2025.