New York

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.

REGISTER HERE

New York Rare Action Network Meet & Greet on Saturday, May 18, 2019 from 10:30a.m.-1:00p.m. at the Guilderland YMCA, Guilderland, NY. This isan opportunity to learn about our efforts here in New York state. Connect with other rare patients, families and supporters. You will hear from your New York Rare Action Network Volunteer State Ambassador, Mary Wootten and other rare disease organizations from New York. CLICK HERE TO REGISTER

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.

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.