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What's Happening Now?

RAN_Megephone_RGBWould 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.

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Stacy Kasprzyk
New York State Ambassador
stacy.kasprzyk@rareaction.org

Frank Rivera

Frank Rivera
New York Community Engagement Liaison 
frank.rivera@rareaction.org

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

This Report Card serves as an evaluation of the state progress in implementing policies pertinent to the rare disease community. With it, NORD hopes to provide a road map for the rare disease community of where each state can improve and, ultimately, push forward the discussion on rare disease public policy.

NY State Report Card (2016)
Medical Foods 85%
Prescription Drug Cost Sharing 100%
Medicaid/CHIP Eligibility 95%
Newborn Screening: RUSP Secondary Conditions 84%
Biosimilar Prescriber Communication 0%
Step-Therapy Protection 0%

Scoring for State Policies

90%-100% = A

80%-89% = B

70%-79% = C

60%-69% = D

0%-59% = F

State Information

Benjamin M. Lawsky, Superindendent

New York State Dept. of Financial Services
One State Street
New York, New York 10004-1511

212-709-3500

In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Online Complaint Submission

800-342-3736

State Health Insurance Consumer Assistance Program

Community Service Society: Community Health Advocates
105 East 22nd Street
New York, NY 10010

Consumer Assistance Program Email: cha@cssny.org
888-614-5400

Marketplace Structure: State

Marketplace Contact: exchange@health.state.ny.us
855.355.5777
TTY: 800.662.1220

Marketplace Website
Enrollment Options
Plan Information
Estimate My Cost

Benefits Offered Under the Marketplace:
Essential Health Benefits
State-Required Benefit

Kaiser State Exchange Profile
State Reforum State Profile
State Health Insurance Website
Find your Provider

Medicaid

New York State Department of Health
Corning Tower
Empire State Plaza
Albany, NY 12237

Email for Assistance: Medicaid@health.state.ny.us
1-800-541-2831

Medicaid Website
Eligibility Requirements
Medicaid Appeal Process

Children’s Health Insurance Program (CHIP)
Children’s Health Coverage Resources

Show pride for rare in your state
Show pride for rare in your state

Program Sponsors

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Corporate Partners stand behind taking rare action with NORD. Become a Corporate Partner Today!
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NORD Links

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