Jacqueline Marie Zbur Rare Disease Advisory Council.

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.