Model Legislation

State of Florida – HB 1373 Rare Disease Advisory Council
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Committee of Jurisdiction: Health and Human Services


The bill creates the Rare Disease Advisory Council (Council) adjunct to the Department of Health (DOH). The bill establishes the membership of the Council as well as the length of member terms. The Council must:

  • Consult with experts on rare diseases and solicit public comment to assist in developing recommendations on improving the treatment of rare diseases in this state.
  • Develop recommended strategies for academic research institutions in this state to facilitate continued research on rare diseases.
  • Develop recommended strategies for health care providers to be informed on how to more efficiently recognize and diagnose rare diseases in order to effectively treat patients.
  • Provide written input and feedback to the DOH, the Medicaid program, and other state agencies on specified matters.
  • The bill requires the Council to meet by October 1, 2021, and provide its recommendations to the Governor and the State Surgeon General by July 1 of each year, beginning in 2022.
  • The bill has a significant, negative fiscal impact on the DOH, which current resources are adequate to absorb, and no fiscal impact on local governments.

State Action


NBCSL Member Sponsor(s):
  • Representative Bobby DuBose (FL)

Summary: State of Florida - HB 1373 Rare Disease Advisory Council
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