HI SCR37

Urges the Department of Health to establish a Rare Disease Task Force comprised of at least one Department of Health representative, persons living with rare diseases, and other community stakeholders.

Directs the Task Force to investigate and make recommendations on quality, cost effectiveness, and accessibility of treatments and services for persons with rare diseases in Hawaii.

Requires the Task Force to submit biennial reports to the Department of Health and the Legislature on its activities and recommendations.

Establishes context that rare diseases affect approximately 143,000 persons in Hawaii's population of 1.431 million, with more than half being specific to the Pacific region.

Notes that 80 percent of rare diseases are genetic in origin and can be inherited across generations.