HSC §124965.8: The advisory council shall perform all of the following duties: (a) Act as the advisory body on rare diseases to the Legislature, and state departments, agencies, commissions, and authorities, and pri

The advisory council shall perform all of the following duties: (a) Act as the advisory body on rare diseases to the Legislature, and state departments, agencies, commissions, and authorities, and private agencies, that provide services to, or that are charged with the care of, persons with rare diseases. (b) Consult with experts on rare diseases to develop recommendations to improve patient access to, and quality of, rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment, and other needed services. (c) Create and maintain an internet web page for the advisory council. (d) Identify, consolidate, and publish on the advisory council’s web page publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases in California to foster recognition and access to treatment. (e) Identify areas of unmet need for research and opportunities for collaboration with stakeholders and rare disease advisory councils in other states that can inform future studies and work done by the advisory council.