NY A01296

Establishes a Rare Disease Advisory Council within the Department of Health to identify best practices, raise awareness, evaluate barriers to care access, and make recommendations to the legislature and governor

Defines "rare disease" as any disease or condition affecting fewer than 200,000 persons in the United States

Council consists of at least 15 members including the Health Commissioner, Superintendent of Financial Services, 9 gubernatorial appointees, 2 Assembly appointees, and 2 Senate appointees, with expertise including physicians, researchers, patients, caregivers, and industry representatives

Members serve up to two 4-year terms without compensation; council must meet at least quarterly and hold its initial meeting within 180 days of the act's effective date

Council must submit annual written reports to the governor and legislative leaders by January 30th each year, with recommendations to be posted on the Department's website and incorporated into New York's Health Improvement Plan