What's Happening Now?
Please join us for advocacy day on the New York Rare Disease Advisory Council bill on Tuesday, April 30th at the capitol in Albany, NY! As you may know, a Rare Disease Advisory Council will give rare disease patients, families, caregivers, and other stakeholders an opportunity to make formal recommendations to the state on how to improve public policy for our community. Currently, the bill has passed the Assembly Health Committee and now heads to the Ways and Means Committee. On the Senate side, the bill is still with Senate Health Committee.
Planning on joining us at the capitol?
Please view this pre-recorded webinar on how to prepare, participate
and other ways to support NY Rare Disease Advisory Council.
New York Rare Action Network Meet & Greet on Saturday, May 18, 2019 from 10:30a.m.-1:00p.m. at the Guilderland YMCA, Guilderland, NY. This isan opportunity to learn about our efforts here in New York state. Connect with other rare patients, families and supporters. You will hear from your New York Rare Action Network Volunteer State Ambassador, Mary Wootten and other rare disease organizations from New York. CLICK HERE TO REGISTER
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 fourth edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
Benjamin M. Lawsky, 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@example.com
New York State Department of Health
Empire State Plaza
Albany, NY 12237
Email for Assistance: Medicaid@health.state.ny.us
Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources