Bills

AB 2613: Jacqueline Marie Zbur Rare Disease Advisory Council.

  • Session Year: 2023-2024
  • House: Assembly

Current Status:

Passed

(2024-09-27: Chaptered by Secretary of State - Chapter 726, Statutes of 2024.)

Introduced

First Committee Review

First Chamber

Second Committee Review

Second Chamber

Enacted

Version:

Existing law establishes the California Health and Human Services Agency, which includes the State Department of Public Health, among other state departments charged with the administration of health, social, and other human services. Under existing law, the State Department of Public Health has authority over various programs promoting public health, including genetic disease testing.

This bill, upon appropriation by the Legislature, would establish within the agency, until January 1, 2029, the Jacqueline Marie Zbur Rare Disease Advisory Council appointed by the State Public Health Officer, as specified. The council would generally act as the advisory body on rare diseases to the Legislature and state and private entities that provide services to, or that are charged with the care of, persons with rare diseases. The council specifically would be required, among other duties, to publish on its web page publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases in California to foster recognition and access to treatment. The bill would require the council to report on its web page on the activities of the advisory council and its findings and recommendations on issues, as specified. The bill would make legislative findings and declarations in support of its provisions.

Discussed in Hearing

Assembly Floor1MIN
Aug 28, 2024

Assembly Floor

Senate Floor2MIN
Aug 27, 2024

Senate Floor

Senate Standing Committee on Appropriations28SEC
Aug 5, 2024

Senate Standing Committee on Appropriations

Assembly Floor3MIN
May 22, 2024

Assembly Floor

Assembly Standing Committee on Health10MIN
Apr 23, 2024

Assembly Standing Committee on Health

Assembly Standing Committee on Health47SEC
Apr 23, 2024

Assembly Standing Committee on Health

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