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FloridaHB 9072025House

Florida Institute for Pediatric Rare Diseases

Sponsored By: Adam Anderson (Republican)

Signed by Governor

AppropriationEducation Administration SubcommitteeHealth & Human Services CommitteeHealth Care Budget SubcommitteeEducation & Employment CommitteeFiscal Policy

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Bill Overview

Analyzed Economic Effects

2 provisions identified: 2 benefits, 0 costs, 0 mixed.

Voluntary genetic screening for Florida newborns

Beginning July 1, 2025, the institute must run the five-year Sunshine Genetics Pilot Program for newborn genetic screening. Screening includes whole-genome sequencing, which reads a baby’s full set of DNA. Participation is voluntary and requires a parent’s consent for each newborn. Screenings by institutions represented on the oversight board require board approval. Clinical findings must go to the parent and the baby’s licensed health care practitioner, including eligible nurses and other specialists. The institute must securely store all pilot data and may share data stripped of identifying details under research data-sharing agreements. By December 1, 2030, it must report enrollment, screening results, health effects, cost-effectiveness, and economic benefits to state leaders. The pilot depends on available state budget funding; the law does not set a family charge or promise free screening.

New rare-disease care and research for children

Beginning July 1, 2025, the law creates the Florida Institute for Pediatric Rare Diseases at Florida State University’s medical school. Its goals include better tests and treatments, coordinated care, family support, health worker training, and partnerships with other organizations. The law also creates the Sunshine Genetics Consortium to connect researchers, doctors, children’s hospitals, universities, and industry partners. Its work includes advanced genetic testing, treatments tailored to patients’ genes, artificial intelligence, and training more genetics specialists. The group must seek outside funds to expand newborn screening and support screenings by participating institutions. Its oversight board, housed at the institute, meets at least every six months. Starting October 15, 2026, the consortium reports yearly to state leaders on research, findings, outreach, and future plans. It must also report members’ use of newborn data stripped of identifying details. This work depends on funding available in Florida’s annual state budget; the law sets no funding amount.

Sponsors & Cosponsors

Sponsor

  • Adam Anderson

    Republican • House

Cosponsors

  • Education Administration Subcommittee

    Affiliation unavailable

  • Health Care Budget Subcommittee

    Affiliation unavailable

Roll Call Votes

All Roll Calls

Yes: 153 • No: 0

Senate vote • 4/30/2025

Senate Floor Vote

Yes: 37 • No: 0

House vote • 4/16/2025

House Floor Vote

Yes: 116 • No: 0

Actions Timeline

  1. Chapter No. 2025-187

    6/26/2025

  2. Approved by Governor

    6/25/2025

  3. Signed by Officers and presented to Governor

    6/18/2025

  4. Ordered enrolled

    4/30/2025House

  5. In Messages

    4/30/2025House

  6. CS passed; YEAS 37 NAYS 0 -SJ 863

    4/30/2025Senate

  7. Read 3rd time -SJ 863

    4/30/2025Senate

  8. Read 2nd time -SJ 863

    4/30/2025Senate

  9. Substituted for CS/CS/SB 1356 -SJ 863

    4/30/2025Senate

  10. Placed on Calendar, on 2nd reading

    4/30/2025Senate

  11. Withdrawn from Fiscal Policy -SJ 863

    4/30/2025Senate

  12. Received

    4/22/2025Senate

  13. Referred to Fiscal Policy

    4/16/2025Senate

  14. In Messages

    4/16/2025Senate

  15. CS passed; YEAS 116, NAYS 0

    4/16/2025House

  16. Read 3rd time

    4/16/2025House

  17. Added to Third Reading Calendar

    4/16/2025House

  18. Placed on 3rd reading

    4/16/2025House

  19. Read 2nd time

    4/16/2025House

  20. Bill added to Special Order Calendar (4/16/2025)

    4/10/2025House

  21. Added to Second Reading Calendar

    4/8/2025House

  22. Bill released to House Calendar

    4/8/2025House

  23. Reported out of Education & Employment Committee

    4/8/2025House

  24. Favorable by Education & Employment Committee

    4/8/2025House

  25. Added to Education & Employment Committee agenda

    4/4/2025House

Bill Text

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