NORD’s Rare Action Network® (RAN) is a grassroots community of advocates and volunteers focused on raising awareness and taking action to improve the health and well-being of the 30+ million Americans living with rare diseases. The mission of RAN is to connect and empower individuals and groups to make positive impacts for the rare disease community through advocacy, community outreach, and awareness.

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Join RAN

Join NORD’s Rare Action Network® and become part of a movement. Together, we connect, empower, and mobilize individuals and communities to take action, raise awareness, and advocate for lasting change.
Take Action

Every voice in the rare disease community has the power to spark change, and yours can make a real difference today. Through our action alerts, you can directly reach out to your lawmakers on urgent policy areas impacting people living with rare diseases.
State Profiles

Each state profile has information on upcoming state-based events, your local NORD Rare Action Network Ambassador, and educational materials designed to help you advocate with confidence. Explore your state to see how it’s advancing rare disease awareness, support, and community – and discover new ways to get involved!

Upcoming Events

Across the country, rare disease champions are coming together to drive change where it starts: at home. Explore upcoming rare disease events designed to empower you to connect with local advocates, elevate rare disease awareness in your community, and engage directly with leaders shaping rare disease policies in your state.

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.

Join RAN