HB1288

Establishes a rare disease advisory council to address needs of rare disease patients in Hawaii.

The bill establishes a rare disease advisory council within the Department of Health to advise on the needs of rare disease patients. The council will include members from the rare disease community, health care providers, insurers, researchers, and the biotech industry. The council's duties include developing a survey of rare disease patient needs, making policy recommendations, identifying research priorities, and establishing best practices for emergencies. The council will also provide educational resources for health care providers and research resources for academic institutions.