Join the Rare Action Network®

The Rare Action Network® (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern.

Why should I join?

Members of the Rare Action 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

Join the Rare Action Network

Goals of the Rare Action Network®

  1. Connect a unified network of rare disease advocates to take action on issues impacting the lives of patients and caregivers affected by rare disease
  2. Increase the awareness of those challenges to key decision-makers and elected officials in the states or regions that can take action to make essential changes
  3. Address issues of access and coverage to essential treatments and therapies for patients at the state level