CA AB2613

Establishes the Jacqueline Marie Zbur Rare Disease Advisory Council within the California Health and Human Services Agency, effective upon legislative appropriation, until January 1, 2029.

Council membership appointed by the State Public Health Officer shall include physicians, nurses, hospital administrators, industry representatives, researchers, geneticists, rare disease patients/caregivers, and patient advocacy organization representatives.

Council duties include serving as advisory body on rare diseases to the Legislature and state agencies, developing recommendations to improve patient access to specialists and healthcare coverage, and maintaining a public web page with resources on rare disease research, diagnosis, and treatment.

Council members serve without compensation but may be reimbursed for travel expenses if funds are available; at least 20 percent of members must have no conflicts of interest with insurers, pharmaceutical benefit managers, or pharmaceutical manufacturers.

Council shall meet at least twice annually, apply for grants from federal and private sources, and report on its activities and recommendations regarding rare disease treatment and services on its web page.