The proposed bill would establish the Rare Disease Advisory Council (RDAC) within the Department of Health Services (DHS) to provide guidance and recommendations for individuals living with rare diseases in Arizona. This new council will consist of diverse representatives from healthcare, academia, and patient advocacy, ensuring a transparent appointment process and geographic diversity among its members. The RDAC will conduct public hearings, provide testimony on relevant legislation, and submit an annual report to the Governor and legislative committees, thereby enhancing support for rare disease patients.

While current statutes remain unchanged, the bill introduces several new provisions, including the establishment of a public website for the council, requirements for public engagement, and the ability to solicit donations for its activities. It also specifies the terms of service for council members and outlines their responsibilities, such as evaluating healthcare coverage for rare disease treatments and identifying educational resources for healthcare providers. Overall, the bill aims to improve the care and support available to individuals affected by rare diseases in Arizona.

Statutes affected:
Introduced Version: 36-142.01
House Engrossed Version: 36-142.01
Senate Engrossed Version: 36-142.01
Chaptered Version: 36-142.01