RARE Daily

Florida Passes Bill to Establish Rare Disease Research Grant Program

March 19, 2024

Rare Daily Staff

The Florida legislature passed a bill that establishes a rare disease grant program.

The Andrew John Anderson Pediatric Rare Disease Grant Program is named for the son of Republican State Representative Adam Anderson, whose son had Tay-Sachs disease. Andrew died at the age of 4.

The program, which would be administered by Florida’s Department of Health, seeks to advance the progress of research and cures for rare pediatric diseases. It establishes grants for scientific and clinical research to advance the search for new diagnostics, treatments, and cures for pediatric rare diseases.

Any university or established research institute located in Florida is eligible to apply for a grant under the program. The bill places a preference for grant proposals that foster collaboration among institutions, researchers, and community practitioners.

The bill requires the Department of Health to award grants through a competitive, peer-reviewed process. It requires the department to appoint peer review panels of independent, scientifically qualified individuals to review the scientific merit of each proposal and establish its priority score, which it will report to the Rare Disease Advisory Council. The council is required to consider the priority score in its recommendations for funding.

The program is subject to an appropriation. It is awaiting the governor’s signature.

Photo: Republican State Representative Adam Anderson


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