Please join the New York Rare Action Network for our bi-monthly virtual rare discussion group. Join rare advocates to discuss challenges rare patients are facing in New York and connect with others.
What's Happening Now?
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for New York’s Rare Action Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in New York.
In order to make meaningful change in the lives of rare disease patients and their families in the state of New York, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.
State Report Card
In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.
Linda Lacewell, Superindendent
New York State Dept. of Financial Services
One State Street
New York, New York 10004-1511
Community Service Society: Community Health Advocates
105 East 22nd Street
New York, NY 10010
Consumer Assistance Program Email: [email protected]
New York State Department of Health
Empire State Plaza
Albany, NY 12237
Email for Assistance: [email protected]
Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources