National Organization for Rare Disorders Advocacy Tool Kit
Contact Your Representatives
Resources to Contact Your Representatives
- NORD’s Rare Action Network has a helpful directory in order to find your elected officials.
- If you need to find a phone number for a member of Congress, call the U.S. Capitol Switchboard at (202) 224-3121.
- Thomas is a Library of Congress website that provides a guide to everything you need to know about the U.S. Congress, including a searchable database of every bill and resolution from 1989 through the current Congressional session.
- OpenSecrets.org documents political contributions.
- On Project Vote Smart (votesmart.org) you can learn how your Members of Congress or Senators voted on an issue and much more.
Meeting with a Member of Congress
Meeting with a Member of Congress, or congressional staff, is one of the most effective ways to convey a message about a specific issue or legislative matter.
- Plan Your Visit Carefully: Be clear about what it is you want to achieve; determine in advance which member or committee staff members you need to meet with to achieve your purpose.
- Make an Appointment: When attempting to meet with a member, contact the Appointment Secretary/Scheduler. Explain your purpose and whom you represent. It is easier for congressional staff to arrange a meeting if they know what you wish to discuss and your relationship to the area or interests represented by the member.
- Be Prompt and Patient: When it is time to meet with a member, be punctual and be patient. It is not uncommon for a Congressman or Congresswoman to be late, or to have a meeting interrupted due to the member’s crowded schedule. If interruptions do occur, be flexible when the opportunity presents itself. Continue your meeting with a member’s staff.
- Be Prepared: Whenever possible, bring to the meeting information and materials supporting your position. Members are required to take positions on many different issues. In some instances, a member may lack important details about the pros and cons of a particular matter. It is therefore helpful to share with the member information and examples that demonstrate clearly the impact or benefits associated with a particular issue or piece of legislation.
- Be Political: Members of Congress want to represent the best interests of their district or state. Whenever possible, demonstrate the connection between what you are requesting and the interests of the member’s constituency. If possible, describe for the member how you or your group can be of assistance to him/her. When it is appropriate, remember to ask for a commitment.
- Be Responsive: Be prepared to answer questions or provide additional information in the event the member expresses interest or asks questions. Follow up the meeting with a thank you letter that outlines the different points covered during the meeting, and send along any additional information and materials requested.
Write Your Representatives
When writing to your U. S. Representative or Senators, keep in mind the following rules of thumb:
- Stick to one subject.
- Be brief.
- Be factual.
- Include the bill number and title (i.e. The Rare Diseases Act, P.L. 107-280, The Rare Diseases Orphan Product Development Act, P.L. 107-281).
- Get personal. Be courteous. Describe how the legislation impacts you. Include key information, using examples to support your position.
- Ask for Action!
- When you receive a reply, study the argument and refute logically, if applicable. If your representative or senators agree with your arguments, a thank you note is most appropriate.
- Your personal letter, written on your personal stationery, will send a strong message: I am a constituent. I vote. The issue is very important to my family and m