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New York

What's Happening Now?

Please join NORD’s New York Rare Action Network (RAN)  for our upcoming Virtual Rare Discussion Groups to exchange stories and experiences of living with or caring for someone with a rare disease, including those experiences related to the COVID-19 pandemic. Come ready to share your concerns, ask questions, and hear updates from NORD. These meetings are open to all–you do not have to be a RAN member.

Tuesday, April 20,. 2021 at 6:00pm EST
Click Here to Register for April 20th Virtual Discussion Group

Tuesday, June 15, 2021 at 6:00pm EST
Click Here to Register for June 15th Virtual Discussion Group

Tuesday, August 24, 2021 at 6:00pm EST
Click Here to Register for April 20th Virtual Discussion Group

Mary Wootten
New York State Ambassador
[email protected]
Sofia Horan
New York State Ambassador
[email protected]
Jessica Asante
Community Engagement Liaison
[email protected]

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.

Check out the New York Rare Disease Day Virtual Event Recording

New York Rare Action Network hosted a Rare Disease Day Virtual Event on February 25, 2021. We were joined by patients, families, caregivers and other rare disease community members at this important virtual event that educated New York legislators and the general public on the challenges faced by rare disease patients and their families.

CLICK HERE FOR THE RECORDING

COVID-19 Resources and Information

State Resource Page

The state of New York has created this helpful resource website in response to COVID-19.

https://coronavirus.health.ny.gov/home

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 Information

Linda Lacewell, 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: [email protected]
888-614-5400

Marketplace Structure: State

Marketplace Contact: [email protected]
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: [email protected]
1-800-541-2831

Medicaid Website
Eligibility Requirements
Medicaid Appeal Process

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

NORD Links

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