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Advocacy Committee

The Advocacy Committee is composed of individuals living with rare diseases and caregivers who help steer our decisions as legislative, regulatory, and other policy proposals are weighed. Members meet regularly and contribute their insights about the unique and changing challenges people affected by rare diseases face every day.


Working on the forefront of public policy, our policy priorities and advocacy efforts are focused in a nonpartisan way to achieve the mission of NORD.

Become an advocate

Visit the Rare Action Network to learn about updates and taking action.

Stories of inspiration

What is it like to have a rare disease? Read stories and share your experiences.

Who we are

Meet the leadership team who is dedicated to achieving our mission –every day.

Financials and governance

Learn about our Board of Directors and how we make financial decisions.

Our history

Explore the history of NORD, how we started, and advancements we have been part of over the years.