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The RareAction 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.

NORD Rare Action Network

Members of the RareAction Network® are part of 30+ million person community working towards improving the lives of patients with rare diseases.  This expansive network enables you to:

  • Connect with other patients, caregivers, and stakeholders, within your state and region through calls, webinars, and in-person meetings

  • Participate in regional and local events to connect, learn and address the nation’s leading issues

  • Develop relationships with key decision-makers and opinion leaders

  • Share your story to help other patients by raising awareness

  • Receive news and information on what the network is taking action on and participate in the network’s Calls to Action

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