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 advanced diagnostic tools, providing comprehensive 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, geneticists, and physicians to advance genetic and precision medicine in Florida. The consortium will be overseen by a board that includes representatives from various medical institutions and will report annually on its activities and findings. The implementation of the provisions outlined in the bill is contingent upon available funding in the General Appropriations Act, and the act is set to take effect on July 1, 2025.