Rare Daily Staff

California Governor Gavin Newsom vetoed legislation in California that would have created a Rare Disease Advisory Council.

A total of 21 states have established Rare Disease Advisory Councils since 2015, and nine others were in the process of forming one, according the National Organization for Rare Disorders.

“While it is important for the public, providers, state agencies, and private partners to have access to information on rare diseases, the purpose and duties of the Advisory Council as would be required by SB 247 are extensive and costly,” Newsom wrote in a veto statement. “Bills with a significant fiscal impact, such as this measure, should be considered in the annual budget process. For this reason, I cannot sign this bill.”

Senator Eggman, D-Stockton, introduced the legislation in California. This bill would have established the Rare Disease Advisory Council within the California Health and Human Services Agency. Among its responsibilities, the council would have been charged with educating medical professionals, government agencies, and the public about rare diseases as an important health issue and encouraged the funding of research to develop new treatments.

The legislation also directed the California Health and Human Services Agency to research and report to the Legislature on existing sources of funding that may be used to finance the formation and operation of the advisory council before anyone was appointed to it. It required the advisory council to apply for, and accept, any grant of funds from the federal government, private foundations, or other sources.

Photo: Gavin Newsom, governor of California

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