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]

Follow New York RAN on Facebook

RAN_Megephone_RGB 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.

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.

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