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.

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