SB1497

Establishes a rare disease advisory council in the Hawaii Department of Health to advise on rare disease needs.

The bill establishes a rare disease advisory council within the Hawaii Department of Health to advise on the needs of rare disease patients. The council will develop policy recommendations, research treatment priorities, and identify best practices to reduce health disparities. It will also publish resources and establish protocols for emergencies. The council will consist of diverse members, including representatives from the rare disease community, health care providers, researchers, and state government. The council will submit annual reports to the governor and legislature.