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 genetic testing to newborns and requires parental consent for participation. The program will be administered for three years and will involve partnerships with state universities and healthcare providers.
Furthermore, the bill establishes the Sunshine Genetics Consortium to facilitate collaboration among clinical and academic professionals, geneticists, and physicians. The consortium will focus on integrating genomic technologies, creating a biorepository network, and developing educational opportunities for clinicians. An oversight board will manage the consortium, consisting of members appointed by various educational and governmental entities. The bill appropriates $5 million in recurring funds and $20 million in nonrecurring funds from the General Revenue Fund for the 2025-2026 fiscal year to support the institute and the pilot program. The act is set to take effect on July 1, 2025.