The Rare Disease Congressional Caucus

Established in 2009, the Rare Disease Congressional Caucus is bipartisan (comprising both Democrats and Republicans) and bicameral (comprising both Representatives and Senators). The original GOP Co-Chair Congressman Fred Upton (R-MI) has become Chairman of the House Energy and Commerce Committee, arguably the most powerful House committee. Jurisdictional issues within the committee include Food and Drug Administration oversight as well as a myriad of issues related to healthcare reform. Committee rules require that Rep. Upton remove himself from all Caucuses. While Upton is not able to serve as the Rare Disease Caucus Co-Chair, he remains passionate about helping patients with rare diseases and helping us seek legislative solutions. He will continue to be a trusted ally to the rare disease community. Upton recommended that Leonard Lance (R-NJ) take over as the Republican Co-Chair of the Caucus.

Full House Member List listed at: Rareadvocates.org/rarediseasecaucus

Rare Disease Congressional Caucus Briefing Nov. 2012

RDLANational Health Council, and Shire, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY) hosted a briefing on Wednesday, November 14, 2012

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What is a 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, which is currently the Republicans.

Video Presentations from the 1st Rare Disease Congressional Caucus Briefing

The National Organization for Rare Disorders (NORD)
and Rare Disease Legislative Advocates (RDLA), in coordination with
Rare Disease Caucus Co-Chairs Representatives Leonard Lance and Joe Crowley hosted a briefing on
“Rare Diseases and Orphan Products”

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Childhood Cancer Caucus

The bipartisan Childhood Cancer Caucus was founded in 2007  by Rep. Michael T. McCaul and Rep. Chris Van Hollen to serve as a public policy clearinghouse for information on pediatric cancer and to be a forum for Members of Congress to work together to address this critical issue. The Caucus strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children.

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Congressional Cystic Fibrosis Caucus

Edward Markey of Massachusetts, Cliff Stearns of Florida, and Tom Marino of Pennsylvania provide bipartisan leadership as co-chairs of the Caucus.

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Rare & Neglected Disease Congressional Caucus Planning Meeting

Monday, November 15, 2010, FasterCures, Washington, DC

Special Guest John Crowley will help facilitate the meeting
Crowley’s leadership helped secure the Caucus co-chairs. He has two children with Pompe, a neuromuscular disease and was the inspiration for the film “Extraordinary Measures.”

The goal of the planning session is to receive input from the whole rare and neglected disease community and build consensus on a broad and inclusive federal legislative agenda advancing multiple initiatives to accelerate the development of new treatments for rare and neglected diseases.

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History of the Rare Disease Congressional Caucus

Established in 2009, the Rare Disease Congressional Caucus is bipartisan (comprising both Democrats and Republicans). In 2010, the original GOP Co-Chair Congressman Fred Upton (R-MI) become Chairman of the House Energy and Commerce Committee, arguably the most powerful House committee. Jurisdictional issues within the committee include Food and Drug Administration oversight as well as a myriad of issues related to healthcare reform.  Committee rules require that Rep. Upton remove himself from all Caucuses. While Upton is not able to serve as the Rare Disease Caucus Co-Chair, he remains passionate about helping patients with rare diseases and helping us seek legislative solutions. He will continue to be a trusted ally to the rare disease community. Upton recommended that Leonard Lance (R-NJ) take over as the Republican Co-Chair of the Caucus.