HI SR23

Director of Health is requested to create a statewide rare disease advisory board to address challenges faced by rare disease patients in Hawaii, including diagnostic delays, misdiagnosis, specialist shortages, and treatment access barriers.

Advisory board membership shall include state agency directors, two physicians with rare disease expertise (one pediatrician), a nurse, hospital representatives, health insurance and biopharmaceutical industry representatives, rare disease researchers, parents of affected children, persons with rare diseases, and patient organizations.

Board shall meet at least three times per year and select a chairperson and vice chairperson from among its members, with Department of Health providing staff support as needed.

Advisory board shall coordinate statewide rare disease research efforts, serve as advisory body to Legislature and state agencies, collect rare disease data, identify treatment priorities, and develop public awareness strategies.

Board shall submit biennial reports to the Department of Health and Legislature on activities, findings, and recommendations regarding quality, cost-effectiveness, and access to rare disease treatment and services in Hawaii.