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Advocacy Events

What do you want your representatives to know? Rare diseases affect 1 in 10 people. That equals considerable voting power. Advocacy Events are organized by NORD’s Rare Action Network®, the nation’s largest advocacy network working to improve the lives of people impacted by rare diseases. The events provide the opportunity for advocates to meet face-to-face with their elected officials and advocate for legislation that directly affects the rare disease community. Listed below, you can find out if an event is being hosted in your state or if a volunteer is needed to lead the charge.

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Benefits of Hosting Advocacy Events

To empower advocates at these events, NORD provides volunteers with:

  • Comprehensive toolkit
  • Sample agenda and tips for working with state legislators
  • Sample press release and major messaging for the event including fliers, handouts, and signage
  • Information packets about the most pressing state level rare disease issues
  • Assistance in connecting with others in your state who might be interested in partnering with you on this project
  • Promotion of your event on website and social media