Days To Go




Advocacy Events

Educate your elected officials.PA Statehouse event

What do you want your representatives to know?  Rare diseases affect 1 in 10 people.  That equals considerable voting power.

State House Events are opportunities to meet face-to-face with your elected officials and advocate for legislation that directly affects the rare disease community.

View the schedule for 2017 and contact us to learn how to get involved.  If there is no event taking place in your state, we can help you plan one.

Share your patient story – it may be presented at your state’s event or in meetings with legislators.


Tools and Resources to Help

To empower advocates at these events, we provide:

  • Comprehensive toolkit for the state level organizers
  • 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 relevant in all states 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 the site, global site run by our partners, and social media