HI HB1288

Establishes a Rare Disease Advisory Council within the Department of Health to advise the governor, legislature, and state agencies on the needs of individuals with rare diseases in Hawaii

Defines "rare disease" as a condition affecting fewer than 20,000 people in the United States, noting over 30 million Americans are affected by more than 7,000 rare diseases

Council membership consists of 14 members including the director of health, insurance commissioner, legislative members, healthcare providers, researchers, a pharmacist, a biopharmaceutical administrator, and two residents with rare disease experience

Council duties include surveying patient needs, developing policy recommendations for improved healthcare access, identifying research priorities, establishing emergency protocols, and reducing health disparities in rare disease treatment

Requires the council to submit a report to the governor and legislature by 20 days before the 2028 legislative session and every three years thereafter on accomplishments, findings, and proposed legislation