HB2380 - Rare Disease Advisory Council

• Establishes the Arizona Rare Disease Advisory Council within the Department of Health Services to provide guidance and recommendations on the needs of individuals with rare diseases in Arizona.

• Council consists of 16 members including academic researchers, healthcare providers, patients, caregivers, industry representatives, and government officials appointed by the Governor, Speaker of the House, and President of the Senate.

• Council shall meet at least monthly during the first year, maintain a public website for meeting minutes and public comments, and provide opportunities for public input on rare disease issues.

• Council members serve three-year terms without compensation but may be reimbursed for expenses; may conduct hearings, research drug pricing barriers, make policy recommendations, and distribute educational resources.

• Council must submit annual reports by December 1 to the Governor and legislature describing council activities and providing recommendations to address the needs of people living with rare diseases in Arizona.