SB 1356 — Florida Institute for Pediatric Rare Diseases

Florida Senate - 2025 CS for CS for SB 1356 By the CommitteesCommittee on FiscalEducation Policy;Postsecondary;

and EducationSenator Postsecondary;Burton 589-02481-25 20251356c1 A bill to be entitled An act relating to the Florida Institute for Pediatric Rare Diseases;

and Senators Burton and Berman 594-03194-25 20251356c2 A bill to be entitled An act relating to the Florida Institute for Pediatric Rare Diseases;

providing the purpose of the institute;

providing meeting and reporting requirements for the consortium;

specifyingproviding thatappropriations; implementation of the act is subject to appropriation;

1004.4211 The Florida Institute for Pediatric Rare PageDiseases; 1 of 6 CODING:

the Sunshine Genetics Pilot Program;

the Sunshine Page 1 of 6 CODING:

Florida Senate - 2025 CS for CSSB 1356 589-02481-25 20251356c1 Genetics Consortium.— (1) The Florida Institute for SBPediatric 1356Rare 594-03194-25Diseases 20251356c2is Diseases;established within the Florida State University College of Medicine as a statewide resource for pediatric rare disease research and clinical care.

the Sunshine Genetics Pilot Program;

the Sunshine Genetics Consortium.— (1) The Florida Institute for Pediatric Rare Diseases is established within the Florida State University College of Medicine as a statewide resource for pediatric rare disease research and clinical care.

(e) Establish collaborations with other research institutions, medical centers, patient and family advocacy organizations, and government agencies whenever deemed Page 2 of 6 CODING:

Florida Senate - 2025 CS for CS for SB 1356 594-03194-25589-02481-25 20251356c220251356c1 organizations, and government agencies whenever deemed appropriate by the institute director to share expertise, raise awareness, and promote a collective effort to tackle pediatric rare diseases.

or a genetic Pagecounselor 3licensed under part III of 6chapter CODING:483.

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Florida Senate - 2025 CS for CS for SB 1356 594-03194-25589-02481-25 20251356c220251356c1 counselor(e) licensedThe underinstitute partshall: III of chapter 483.

(e) The institute shall:

(4)(a) The Sunshine Genetics Consortium is established to create a network of clinical and academic research professionals, geneticists, and physicians from state universities and thisthe state’s children’s hospitals to collaborate with leaders in the geneticsgenetic industry and build and support a culture of collaborative research and the development of cutting-edgecutting edge genetic and precision medicine in the state.

Advance research and the development of cutting-edgecutting edge genetic and precision medicine.

Leverage advancements in artificial intelligence Pageutilization 4in ofgenomics. 6 CODING:

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Florida Senate - 2025 CS for CS for SB 1356 594-03194-25589-02481-25 20251356c220251356c1 utilization4. in genomics.

4.

The oversight board for the consortium shall consist of the director of the institute,institute who shall serve as chair,chair and the following voting members,members who shall serve 2-year terms:

One member nominated by the dean of Florida Page 5 of 6 CODING:

Words stricken are deletions;

words underlined are additions.

Florida Senate - 2025 CS for CS for SB 1356 594-03194-25 20251356c2 International University’s School of Medicine and approved by the university’s president.

e.

One member nominated by Nicklaus Children’s Hospital and approved by the hospital’s president and chief executive officer.

f.

g.e.

h.Page 5 of 6 CODING:

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words underlined are additions.

Florida Senate - 2025 CS for SB 1356 589-02481-25 20251356c1 f.

(5) The provisions of this section shall be implemented to the extent of available appropriations contained in the annual General Appropriations Act for such purpose.

For the 2025-2026 fiscal year, the sum of $5 million in recurring funds is appropriated from the General Revenue Fund to the Florida Institute for Pediatric Rare Diseases.

Section 3.