SB 1356 Florida Senate · 2025 Regular Session

Florida Institute for Pediatric Rare Diseases

Summary

Florida Institute for Pediatric Rare Diseases; Establishing the Florida Institute for Pediatric Rare Diseases within the Florida State University College of Medicine; requiring the institute to establish and administer the Sunshine Genetics Pilot Program for a specified period; providing institute responsibilities and duties relating to the pilot program; providing requirements for participation in the pilot program and data collection and release in the pilot program, etc.

Issues: ✓ Healthcare

Bill status in committee 1 of 4 stages cleared

Introduction

Mar 2025

Committee Review

Floor Vote

Governor

Introduced Mar 10, 2025 Last action Apr 30, 2025

Maddy AI version diff · 2 comparisons

What changed between versions

S 1356 c1 → S 1356 c2 · 7 edits

MODERATE

The bill was revised from a committee substitute to a committee substitute version 2, adding new responsibilities for the Sunshine Genetics Consortium and updating oversight board membership requirements. The changes expand the consortium's duties to include education, funding solicitation, and patient care support while adding specific university and hospital representatives to the oversight board.

Scope change

The bill's scope was expanded to include additional consortium responsibilities and more detailed oversight board composition requirements.

REQUIREMENT

Added seven new duties for the Sunshine Genetics Consortium including developing educational opportunities, supporting geneticist growth, soliciting external funds, and promoting patient care for families with genetic disorders.

Added a new requirement for the consortium to report on the use of deidentified newborn data by consortium members.

Changed the consortium description to specify 'state universities and this state's children's hospitals' instead of just 'state universities and the state's children's hospitals'.

Added five new voting members to the oversight board representing specific universities (UF, USF, UM, FIU), Nicklaus Children's Hospital, and the Governor.

Added a requirement that the oversight board convene at least once every 6 months.

TIMELINE

Changed consortium reporting requirements to begin October 15, 2026, and be submitted annually rather than by December 1, 2030.

FISCAL

Added language specifying that implementation is subject to available appropriations in the annual General Appropriations Act.

Floor votes

How they voted

No floor votes recorded yet.

Full legislative history

Actions timeline

Total actions

Key actions

Committee

Apr 3, 2025

Upper · Passed

Pending reference review -under Rule 4.7(2) - (Committee Substitute)

upper

Mar 28, 2025

Upper · Passed

On Committee agenda-- Fiscal Policy, 04/02/25, 9:00 am, 110 Senate Building

upper

Mar 26, 2025

Upper · Passed

Favorable by Appropriations Committee on Health and Human Services; YEAS 10 NAYS 0

upper

Mar 21, 2025

Upper · Passed

On Committee agenda-- Appropriations Committee on Health and Human Services, 03/26/25, 1:00 pm, 412 Knott Building

upper

Mar 19, 2025

Upper · Passed

Now in Appropriations Committee on Health and Human Services

upper

Mar 19, 2025

Upper · Passed

Pending reference review under Rule 4.7(2) - (Committee Substitute)

upper

Mar 12, 2025

Upper · Passed

On Committee agenda-- Education Postsecondary, 03/17/25, 1:30 pm, 301 Senate Building

upper

Mar 10, 2025

Introduced

upper

Mar 6, 2025

Committee

Referred to Education Postsecondary; Appropriations Committee on Health and Human Services; Fiscal Policy

upper

1 primary · 1 co-sponsor