Educate your elected officials.
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.
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 rarediseaseday.us site, rarediseaseday.org global site run by our partners, and social media