Bill > HB1288

This bill establishes a Rare Disease Advisory Council within Hawaii's Department of Health to address the challenges faced by individuals with rare diseases, which are defined as conditions affecting fewer than 20,000 people in the United States. The council will consist of 14 members, including ex officio representatives from state health and insurance departments, legislators, and appointed members from various professional backgrounds such as researchers, healthcare providers, geneticists, and individuals with personal experience with rare diseases. The council's primary responsibilities include developing a comprehensive survey of rare disease patient needs, creating policy recommendations to improve patient access to specialized care and treatments, identifying research priorities, publishing accessible resources, establishing training programs for healthcare professionals, and distributing educational materials about rare diseases. The council will be required to submit a report to the governor and legislature every three years detailing its accomplishments, progress, findings, and recommendations. This legislation aims to support the rare disease community by providing a dedicated platform for addressing their unique medical, research, and policy challenges, joining 29 other states that have already established similar advisory councils.

Health and Social Services

https://www.capitol.hawaii.gov/session/measure_indiv.aspx?billtype=HB&billnumber=1288&year=2026