Bill S.1287a / A.1296a, from Senator Roxanne Persaud (19/D) & Assemblywoman Amy Paulin (88/D), passed the NY Senate unanimously on March 19., following unanimous passage by the Health Committee March 4th. The bill now needs passage by the Assembly Ways & Committee to advance to a vote by the full Assembly. 

Efforts to pass the bill are being led by the National Organization of Rare Disorders and a coalition of New York state rare disease groups. To mark rare disease day 2025, members of the NYS rare disease community joined NORD for a patient advocacy day in Albany on 2/25 to press for the RDAC bill. NY is part of the NORD campaign to establish RDACs in all 50 states, with 29 states adopting a council co far.

The bill will create a permanent rare disease advisory council under the Dept. of Health to study the needs of people with rare diseases and make recommendation for addressing them.  The RDAC will build on the Rare Disease Work Group which released it's report 12/24. Among it's recommendations are the establishment of a permanent council to focus on rare disease needs. When established, a New York State RDAC  will consist of patients, healthcare providers, pharma, and health plans. Read the bill and get updates on it's progress.

The bill has until mid June to pass before the Legislature goes on recess.

Click here to support the NYS RDAC bill!