Bill > S1356

This bill establishes the Florida Institute for Pediatric Rare Diseases within Florida State University's College of Medicine, with the primary purpose of improving health outcomes for children with rare diseases through research, clinical care, education, and advocacy. The institute will create the Sunshine Genetics Pilot Program, a 5-year voluntary newborn genetic screening initiative that includes whole genome sequencing, where parents must provide consent for participation. The program will collect and securely store genetic data, which will be shared in a deidentified format with researchers. Additionally, the bill creates the Sunshine Genetics Consortium, a network of clinical and academic professionals from state universities and children's hospitals aimed at advancing genetic research, developing precision medicine, and supporting families with children diagnosed with genetic disorders. The consortium will be overseen by a board comprising representatives from various medical schools, children's hospitals, and governmental appointees, who will meet at least twice annually and provide annual reports to state leadership. The implementation of these initiatives is contingent upon available state appropriations, with the act set to take effect on July 1, 2025.

Budget and Finance

Education Postsecondary (S), Fiscal Policy (S)

https://www.flsenate.gov/Session/Bill/2025/1356