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New York

Mary Wootten
New York State Ambassador
[email protected]

What's Happening Now?

Join the New York Rare Action Network for Rare Disease Day on Thursday, February 27, 2020 from 9:00am – 2:00pm Convening in Room 104A, Legislative Office Building, 198 State St, Albany, NY 12210There is no cost to participants to attend this event.  Join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event. A resolution acknowledging Rare Disease Day in the state of New York will be read on the senate floor. Following the resolution hearing you will have an opportunity to visit with state legislators and their staff to discuss the challenges rare disease patients face. Please note, the time for the resolution hearing will be announced the week prior to the event.You will also learn how you can make a difference in the lives of rare disease patients and their families here in our great state of New York.

CLICK HERE TO REGISTER

Rocket Pharmaceutical’s Rare Disease Day event aims to provide all who attend an opportunity to learn more about rare disease and the need for new treatment options. The event will highlight patient artists who raise awareness of their disease through their artwork. At the event, patient panelists will share their personal experiences with rare disease, and attendees will be given an opportunity to mingle with patients, caregivers, patient advocates, researchers and physicians. Rocket will also have educational materials available to provide patients and with more details about drug development and the clinical trial process.

The theme of Rocket’s Rare Disease Day event is “I am RARE, hear me ROAR,” highlighting the Roaring ‘20s, a decade that saw the discovery of ground-breaking medicines including penicillin and insulin, ultimately saving millions of lives. Throughout the 1920’s, advancements in science led to the development of many new technologies, vaccines and drugs improving healthcare for generations to this day. With the recent advent of genomic medicine and research tools, it has been suggested this decade may demonstrate the true potential of gene therapies. The event will be held from 3-7 p.m. EST at Carnegie Hall on Saturday, February 29. Please contact [email protected] or visit https://www.rocketpharma.com/event/rare-disease-day-2020/ for more details and to RSVP if you are interested in attending.

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.

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.

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.

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800-342-3736

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

Consumer Assistance Program Email: [email protected]
888-614-5400

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Marketplace Contact: [email protected]
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TTY: 800.662.1220

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