Bill > A01296

This bill establishes a Rare Disease Advisory Council within the Department of Health to address the needs of individuals with rare diseases, defined as conditions affecting fewer than 200,000 people in the United States. The council, comprised of at least seventeen members with diverse expertise including healthcare professionals, researchers, insurance and biopharma representatives, patients, and caregivers, will be responsible for identifying best practices, raising awareness, evaluating barriers to accessing care, and making recommendations to the legislature and governor. The council will also focus on developing emergency preparedness plans for rare disease patients, soliciting public input, and advising on pending legislation and regulations. It will produce an annual report detailing its findings and recommendations, which will be publicly accessible and incorporated into state health improvement plans. The council can also accept funding to support its initiatives.

Budget and Finance, Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/A1296