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FL S1356
Bill
Status
Introduced
2/26/2025
Primary Sponsor
Fiscal Policy
Click for details
AI Summary
- Establishes the Florida Institute for Pediatric Rare Diseases within the Florida State University College of Medicine to serve as a statewide resource for pediatric rare disease research, clinical care, education, and advocacy
- Creates the Sunshine Genetics Pilot Program, a 5-year opt-in newborn genetic screening initiative including whole genome sequencing, with parental consent required for participation
- Requires the institute to maintain a secure database of pilot program data and provide deidentified newborn data to consortium members under data sharing agreements for research purposes
- Establishes the Sunshine Genetics Consortium, governed by a 9-member oversight board with representatives from UF, USF, University of Miami, FIU, Nicklaus Children's Hospital, and appointees from the Governor, Senate President, and House Speaker, meeting at least every 6 months
- Requires a pilot program report to the Governor and legislative leaders by December 1, 2030, covering enrollment metrics, genome sequencing outcomes, clinical impact, and cost effectiveness, with annual consortium reports beginning October 15, 2026; implementation is contingent on legislative appropriations and takes effect July 1, 2025
Legislative Description
Florida Institute for Pediatric Rare Diseases
Last Action
Laid on Table, companion bill(s) passed, see CS/CS/HB 907 (Ch. 2025-187)
4/30/2025
Committee Referrals
Fiscal Policy3/26/2025
Appropriations Subcommittee on Health and Human Services3/19/2025
Full Bill Text
No bill text available