Bill > SB5097

This bill establishes an advisory council on rare diseases within the Department of Health. The council will include clinicians, researchers, patient representatives, and industry members, and will advise the state government on issues related to rare diseases, such as research, diagnosis, treatment, and education. The council will also create a publicly accessible repository of information on rare diseases and submit biennial reports to the governor and legislature. The bill aims to address the challenges faced by people with rare diseases, including delays in diagnosis, lack of medical specialists, and shortages of treatments and therapies.