CA SB247

Establishes the Rare Disease Advisory Council within the California Health and Human Services Agency to coordinate statewide efforts on rare disease research, diagnosis, and treatment.

Council composition includes state agency directors appointed by the Secretary of California Health and Human Services, and public members appointed by the State Public Health Officer including physicians, nurses, hospital representatives, patient advocates, and rare disease patients or family members.

Council duties include researching data collection methods for rare diseases, identifying best practices for rare disease care, developing public awareness strategies, and advising the Medi-Cal Drug Use Review Board on drug access for rare disease patients.

Council must meet at least 3 times annually and submit biennial reports to the California Health and Human Services Agency and Legislature on its activities, findings, and recommendations regarding rare disease treatment and services.

Agency must research and report to Legislature on existing funding sources before making appointments; council may accept grants from federal government and private foundations but cannot accept funds from employers of current council members.