Become an Advocate

The first step to advocate is to determine who your elected officials are. You can search on both the official Senate and House of Representative websites for your federal officials. However, by using one of the below resources, you can also see the district map, see all your federal officials in one place and even learn about some state representatives.

Map of US Congressional Districts | Federal officials and district map by GovTrack

NORD Rare Action Network | Federal and state officials by National Organization of Rare Diseases (NORD)

Find your Representatives | Federal, state and local officials by Common Cause

Once you have your list of officials, you can email or call them to discuss concerning matter or request a meeting. Contact information will be listed on their official website or, for federal officials, you can call the US Capitol Switchboard at (202) 224-3121. Both federal and state officials will have local office(s) and one in the capitol where they serve. You can also engage your representatives through social media such as Facebook and Twitter.

Scheduling a meeting with Your Legislator | Fact sheet by Rare Disease Legislative Advocates (RDLA)

Social media & email for Senators & Governors | List of Facebook, Twitter and emails by National Organization of Rare Diseases (NORD)

RD Advocacy on Social Media | Fact sheet by Rare Disease Legislative Advocates (RDLA)

Current Congressional Calendar | Federal officials working in DC by Roll Call

Meeting with your representative can be an effective way to share your message. A little preparation will not only strengthen your position, but make you feel more comfortable. Here are some helpful hints to get ready:

Learn about current issues

Check out FARA’s advocacy initiatives. Read relevant material and/or listen to any webinars offered. It is up to you to educate the Member on the particular issue or piece of legislation you are advancing. There is no way that they would know or understand what the implications of their legislative actions would be on FA specifically, or rare disease more generally, unless you tell them!

Develop your “elevator speech”

How would you explain ataxia to someone who has never heard of it? Include a brief explanation of your diagnostic odyssey if pertinent. Think about details of how ataxia impacts your daily life. Tie your experiences to the issue(s) currently being considered.

Learn about your elected official

Check out his/her website, read his background, see what areas he/she is most interested in. You may find a personal connection (town, school, activity, sports team) that you both share and this could open a conversation. Advocacy is about building relationships and sometimes that happens over the most unusual items in common.

Be prompt, be concise, be direct

Elected officials, and their staff, have busy schedules but meeting constituents is an important part of the job. Be considerate of their time but confident in why you are there. Tell them your “ask” or what you want them to do.

Don’t be nervous. They are folks just like you, and in fact, they work on your behalf!

You will likely meet with a staff member. Staffers are the ones that learn the issues, advise the official, and follow up with you. Good connections with staff will translate to good communications with your representative.

Make a connection to constituency

Members of Congress want to represent the best interests of their district or state. Who else would be impacted by the action? Would revenue or jobs be impacted?

Thank them, leave material behind, follow up

Thank them for their time and, if appropriate, offer assistance with the issue. Make sure to leave behind relevant material. Send a follow up email that includes points covered during the meeting, next steps, and any additional information requested. Follow up periodically on the status of your issue. Each communication helps to build a relationship with your representative’s office.