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our mission is to
connect and empower

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a unified network of
people and organizations

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with tools, training,
and resources

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to become effective
for rare diseases

The Rare Action Network®, powered by the National Organization for Rare Disorders (NORD), serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state based initiatives across the United States. We stand for equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease.


We Want to Hear From You!

NORD’s Policy team is conducting a survey to help guide our future work. We invite you to take a moment to share your experience to help us better prioritize the needs of rare disease patients and families just like you–by taking the survey below.

We will review all the feedback and continue to advocate for you at the state and federal levels. Please be as open and detailed as you feel comfortable.

Thank you in advance for your help and input. We look forward to reviewing your answers and continuing to represent the 25-30 million Americans living with rare diseases. In the meantime, if you have ideas for future surveys or feedback to share, please do not hesitate to contact us at

Please complete by August 2, 2019. Thank you in advance for your participation!


Get Involved

Become a rare advocate today to unlock resources to connect with other members of the rare disease community within your state, attend local events, meet and build relationships with key decision-makers and opinion leaders, and receive breaking news and updates on Calls to Action.

NORD Links


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