NY A10292

Establishes a 15-member Rare Disease Advisory Council within the Department of Health, including the Health Commissioner, Superintendent of Financial Services, nine gubernatorial appointees, and members appointed by legislative leaders.

Defines "rare disease" as a condition affecting fewer than 200,000 U.S. residents annually or subject to National Institutes of Health Rare Diseases Clinical Research Network studies.

Council members serve up to two four-year terms with no compensation but reimbursement for necessary expenses; the council must meet at least quarterly and maintain a public website for meeting notices and public comments.

Council responsibilities include identifying best practices for rare disease awareness, evaluating barriers to care and treatment, establishing emergency response protocols, and developing policy recommendations on patient access to specialists, diagnostics, and affordable coverage.

Requires the council to submit written reports to the Governor and legislature annually beginning one year after the law's effective date, including lists of publicly accessible resources on rare disease research, diagnosis, and treatment.