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.
– Find, write and call your elected officials
– Map of United States Congressional Districts
– Find information on elections in your area
– Track your legislators’ voting history on rare disease issues with our Legislative Scorecard
– How to attend a Congressional town hall
– Track your legislator’s campaign donations through Open Secrets
– Learn about the legislative process for a bill to become a law
– Utilize social media to engage your Members of Congress
– Determine how your state ranks in state policy legislative tracker
– Build relationships with your representatives
– Twitter handles for Senators and Governors
