Section 26:2AA-9 - Purpose of councilThe purpose of the advisory council shall be to:
a. act as the advisory body on rare diseases to the Legislature and State departments, agencies, commissions, authorities, and private agencies that provide services to, or are charged with the care of, persons with rare diseases;b. conduct a thorough and comprehensive study of all issues relating to the quality of and access to treatment and services provided to persons with rare diseases in this State, including the link between rare diseases and the COVID-19 pandemic, and to develop policy recommendations on those issues;c. develop recommendations for best practice standards encompassing the most effective strategies for recognizing and treating rare diseases in New Jersey;d. identify effective research-based strategies that have been developed to help diagnose, treat, and prevent rare diseases;e. develop effective strategies to raise public awareness of rare diseases in this State;f. evaluate and make recommendations to improve: (1) the State's Newborn Screening Program in the Department of Health; and(2) State Medicaid coverage for approved treatments and medications for patients with a rare disease;g. research and make policy recommendations to the Legislature on access to health insurance specialists and other needed services for patients with a rare disease; andh. identify, with assistance from the public, additional research topics on rare disease to inform future studies the council may conduct.Added by L. 2021, c. 135,s. 3, eff. 6/30/2021.