Bill > HB1532

This bill creates the Arkansas Rare Disease Advisory Council within the Department of Health to address challenges faced by individuals with rare diseases. The council will consist of eight members, including researchers, healthcare professionals, patients, caregivers, and experts from various fields, who will serve three-year terms and represent the state's diverse population. The council's primary responsibilities include educating the public and government about rare diseases, conducting research on patient needs, providing policy recommendations, consulting experts to improve healthcare access, evaluating insurance coverage, identifying research opportunities, and distributing educational resources. Specifically, the bill defines a rare disease as affecting fewer than 200,000 people in the United States and notes that approximately 95% of rare diseases lack FDA-approved treatments. The council will be required to submit annual reports to the Governor and Legislative Council, detailing their activities, funding status, and recommendations for supporting rare disease patients. Members may solicit and manage funds to support the council's operations, and they will meet at least monthly in the first year and quarterly thereafter. The bill aims to create a comprehensive approach to addressing the complex challenges faced by individuals with rare diseases in Arkansas.

Health and Social Services

https://arkleg.state.ar.us/Bills/Detail?id=hb1532&ddBienniumSession=2025%2F2025R