Rare Disease Congressional Caucus

What is the 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 and 28 members in 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, 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.

What is a Solution: The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists and industry), and creates opportunities to address barriers to the development of and access to life-altering treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Working together we can find solutions that transform hope into therapies 

To join the Rare Disease Caucus please contact: 

Sen.Klobuchar’s office: Ruth_Mcdonald@klobuchar.senate.gov 

Sen.Wicker’s office: Sally_Thompson@wicker.senate.gov 

Rep.Bilirakis’ office: Chris.Jones@mail.house.gov 

Rep.Matsui’s office: Jackie.Weinrich@mail.house.gov