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NORD’s Rare Action Network™ mobilizes grassroots supporters across the country to advocate for policies that benefit patients with rare diseases.  The network operates primarily at the state level to complement NORD’s already robust Federal policy work.


State-by-State Information

Learn more about the current initiatives related to the Rare Action Network and our successes to date.

Get Involved in State Advocacy

The network is composed of stakeholders across the community, including NORD’s members, other patient advocacy groups, state-based health coalitions, patients/individuals, caregivers, biotechnology and pharmaceutical companies, state health departments, state health insurers, healthcare providers, and professional medical societies.

At this time, we are looking for state ambassadors who will work with our staff to inform NORD of their constituencies’ activities and needs, ensure consistent messaging and calls to action, and to advise on training and educational initiatives for members and key officials.   If you are interested in serving as a state ambassador contact us here.

Rare Action Network Goals

  • Build a unified state and local network of rare disease advocates who can take action on issues impacting patients with rare diseases
  • Increase awareness among local healthcare policy and decision-makers of the challenges faced by the rare disease community
  • Address specific legislation related to access and coverage for essential medical therapies.