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New York Rare Action Network Advocacy Day

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April 30, 2019
10:00 am - 2:00 pm

New York State Capitol


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.


In advance of the advocacy day, NORD will host a free webinar on Thursday, April 18th, to go over how to participate and other ways to support the NY Rare Disease Advisory Council. If you are interested in attending the webinar and advocacy day please register at the link below:

Webinar Details: Thursday, April 18, 2019 12:00 PM – 1:00 PM EDT
Please join my meeting from your computer, tablet or smartphone.

You can also dial in using your phone.
United States: +1 (646) 749-3122
Access Code: 591-012-405

NORD Links


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