The Rare Disease Congressional Caucus is a forum for Members of Congress to collaborate on ideas to improve the health and lives of rare disease patients and family members by facilitating conversations between Congress, the scientific community, and patient communities; building support for legislation to address barriers and challenges; and serving as champions of the rare disease community in Congress.
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The bipartisan (comprising of both Democrats and Republicans) Rare Disease Congressional Caucus was established in 2010 by original Co-Chair Congressman Fred Upton (R-MI).
The caucus is now bicameral (in both the House and Senate) and has more than 130 members in the House.
In the 119th Congress, Representatives Gus Bilirakis (R-FL) and Doris Matsui (D-CA) serve as the House co-chairs, and Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN) serve as co-chairs in the Senate. The Congressional Rare Disease Caucus provides a vital platform for discussing pressing policy issues on rare diseases.
What is a 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. In other words, no bills can be introduced or voted on during a briefing. 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 to the House Committee on Administration.
