S.C.R. No. 66 Summary

• Requests the Director of Health to establish a statewide rare disease advisory board to address challenges faced by Hawaii residents with rare diseases, including diagnostic delays, misdiagnosis, and limited access to treatments.

• Board membership to include state agency directors, physicians with rare disease expertise (including a pediatrician), nurses, hospital representatives, insurance and biopharmaceutical industry representatives, researchers, patients, parents, and patient organizations.

• Advisory board shall meet at least three times per year and select a chairperson and vice chairperson from its membership.

• Board responsibilities include coordinating statewide rare disease research efforts, serving as advisory body to Legislature and state agencies, collecting rare disease data, identifying best practices, and developing public awareness strategies.

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