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 members appointed by the governor, including representatives from healthcare, academia, and patient advocacy, ensuring geographic and population diversity among its members. The council will conduct public hearings, provide testimony on legislation, and submit an annual report to the Governor and legislative committees, thereby enhancing support and resources for rare disease patients. In terms of updates to current statutes, the bill introduces several new provisions that detail the council's responsibilities, such as developing a public website, facilitating public input, and soliciting donations for its operations. It also specifies the terms of service for council members and emphasizes the council's role in improving access to care and treatment for rare disease patients. The bill aims to address the challenges faced by these individuals, thereby fostering better policies and support for affected individuals and their families, while removing outdated legal language that may not align with the current needs of the community.

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