HB 1288 Summary

• Establishes a Rare Disease Advisory Council within the Department of Health to advise the Governor, Legislature, and state agencies on the needs of rare disease patients.

• Defines a rare disease as any disease or condition affecting fewer than 20,000 people in the United States.

• Council shall consist of 14 members including the Director of Health, Insurance Commissioner, one House member, one Senate member, and 10 gubernatorial appointees representing academia, medical professionals, hospitals, biopharmaceutical industry, and patient/caregiver representatives.

• Council duties include developing a landscape of patient needs, creating policy recommendations to improve access to care and specialists, establishing educational resources for providers, identifying research priorities, and developing emergency protocols for rare disease patients.

• Council must submit a comprehensive report to the Governor and Legislature by 2028 and every three years thereafter detailing accomplishments, findings, recommendations, and any proposed legislation.