Facebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.
You can find a list of Twitter handles for U.S. Senators here, and another for members of the U.S. House of Representatives here. The National Conference of State Legislatures has a list of state legislative social media websites that is available here.
How can YOU use social media? Below are several examples. For all of them, make sure to tag your legislators on Facebook and use their official Twitter handles to make sure they see your posts.
- Encourage your legislators to support or oppose specific legislation, and thank them when they do.
- Are your Representative and Senators members of the Rare Disease Congressional Caucus? Tweet to thank them if they are or ask them to join if they are not, and post a respectful request on their Facebook pages.
- Thank legislators (or their staff) for meeting with you, especially if they agree to something you requested such as supporting legislation. Take a photo to include in your post, if possible.
- Use your Twitter account to ask your followers to take action. Retweet action alerts from other organizations that you support in order to expand the number of people who see it and participate.
- You can also increase the number of people who participate in action alerts by sharing them on Facebook. Rare disease advocacy organizations rely on help from individual advocates who not only take action, but call on their friends and family to do so as well.
Emily Eckland, Digital and Social Media Communications Manager for Eli Lilly & Company, discussed Best Practices for Staying in Touch and Social Media to Build Momentum at the Legislative Conference during Rare Disease Week on Capitol Hill. The video of her presentation is available on the Legislative Conference resource page.