Ask Your Members of Congress to Join the Caucus

Please contact your Members of Congress and urge them to join the Rare Disease Congressional Caucus. Click the link above to enter your information and automatically send an email to your Members.

Thank you to our 2020 Rare Disease Caucus Sponsors:

For more information about sponsoring a Rare Disease Congressional Caucus Briefing contact: Carol Kennedy, ckennedy@everylifefoundation.org

Caucus Briefings

Background

The Congressional Rare Disease Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases.

The bipartisan (comprising both Democrats and Republicans) Rare Disease Caucus was established in 2010 by original Co-Chair Congressman Fred Upton (R-MI). The caucus is now bicameral (in both House and Senate) and has more than 100 members in the House. In the 115th Congress, Representatives Leonard Lance (R-NJ) and GK Butterfield (D-NC) serve as co-chairs. In late 2015, Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) agreed to serve as co-chairs in the Senate. The Congressional Rare Disease Caucus provides a vital platform for discussing pressing policy issues on rare diseases.

Congressional Caucus

A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of Caucuses. The most common caucuses consist of members united as an interest group. A Caucus can hold briefings to raise awareness on an issue. However, briefings are not actionable, ie: no bills can be introduced or voted on. A Caucus may join Members together in a voting block to support or oppose legislation, however most interest group caucuses are used to gain media attention and raise public awareness. Congressional Caucuses must be re-filed in the House at the start of each new Congress. The filing papers must be submitted by the majority party.