These advocacy tools are designed to help rare disease patients, parents, caregivers and other affected parties learn the basics of legislative advocacy. Below you will find resources that will help you understand the legislative process, how to get your organization’s message out, and means for contacting your elected officials. If you’ve found a tool that rare disease advocates should know about, email Shannon von Felden at svonfelden@everylifefoundation.org to have it added to the list.
RDLA Tip Sheets
Lobbying for Rare Disease Nonprofit Organizations
Creating a Rare Disease State Legislative Caucus
Tools on contacting and meeting with your Members of Congress:
Find, write and call your elected officials
How to make a one-pager on a legislative issue
Build Relationships with your Representatives
Utilize social media to engage with your Members of Congress
Twitter handles for Senators and Governors
Tools to learn about your Legislators:
Map of United States Congressional Districts
Find information on elections in your area
Track your legislators’ actions on rare disease issues with our Congressional Scorecard
Printable Congressional Scorecard for 115th Congress
How to attend a Congressional town hall
Track your legislator’s campaign donations through Open Secrets
Tools to learn more about legislation and lobbying:
Learn about the legislative process for a bill to become a law
Determine how your state ranks in state policy legislative tracker
