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SB 1356

Florida Institute for Pediatric Rare Diseases

2025 Regular Session Introduced by Lori Berman and 1 co-sponsor

Florida establishes a pediatric rare disease institute to improve diagnosis, treatment, and research for children with rare medical conditions, filling a significant clinical research gap.

Laid on Table, companion bill(s) passed, see CS/CS/HB 907 (Ch. 2025-187)
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Bill Summary · SB 1356

Legislative bill overview

SB 1356 establishes the Florida Institute for Pediatric Rare Diseases, a specialized research and clinical facility focused on diagnosing, treating, and researching rare diseases affecting children. The bill was substituted by its House companion (CS/CS/HB 907), which ultimately passed and became law (Chapter 2025-187).

Why is this important

Rare pediatric diseases affect thousands of Florida children but receive limited research funding and clinical attention due to their low prevalence. This institute could improve diagnosis times, treatment options, and quality of life for affected children while positioning Florida as a leader in pediatric rare disease research.

Potential points of contention

  • Funding mechanism and costs: The bill's fiscal impact and whether it requires new state appropriations versus redirected funding remains a key consideration for budget discussions.
  • Operational scope and location: Questions about which rare diseases qualify for focus, whether the institute is a standalone facility or integrated with existing universities/hospitals, and geographic accessibility across the state.
  • Research vs. clinical balance: Determining appropriate resource allocation between pure research activities and direct patient care services, particularly for low-incidence conditions.

Compiled from official sources — confirm details with the bill’s official record.

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