Advocacy Tools - Rare Disease Legislative Advocates

Advocacy Tools

These advocacy tools are designed to help rare disease patients, parents, caregivers and others advocate for the rare disease community. Below you will find resources to help you understand the legislative process, how to get your organization’s message out, and means for contacting your elected officials.

RDLA Tip Sheets

Foster a Relationship with Your Member of Congress

Scheduling a Meeting with Your Legislator

Making a One Pager for Meetings with Legislators

Rare Disease Advocacy on Social Media

How to Attend a Townhall Meeting

Lobbying for Rare Disease Nonprofit Organizations

Creating a Rare Disease State Legislative Caucus

Other Advocacy Resources

Tools on contacting and meeting with your Members of Congress:

Build Relationships with your Representatives

Twitter handles for Senators and Governors

Tools to learn about your Legislators:

Track your legislators’ actions on rare disease issues with our Congressional Scorecard

Map of United States Congressional Districts

Find information on elections in your area

How to attend a Congressional town hall

Track your legislator’s campaign donations through Open Secrets

Tools to learn more about legislation:

Learn about the legislative process for a bill to become a law

Determine how your state ranks in state policy legislative tracker