Rare Disease Caucus
The Rare Disease Legislative Caucus is a bi-partisan Congressional Caucus open to all members of the United States House and Senate. The Caucus is currently Co-Chaired by Representative Joseph Crowley(D-NY) and Representative Leonard Lance (R-NJ) from the House of Representatives and Senator Orrin Hatch (R-UT) and Senator Amy Klobuchar (D-MN) from the Senate. The Caucus was originally founded and Chaired by Congressman Fred Upton (R-MI) and Joseph Crowley in 2009.
The Caucus works to advance legislation and education regarding specialized and uncommon health issues and diseases, while also promoting patient advocacy. The Caucus works closely with the Rare Disease Legislative Advocates group.
Rare Disease Legislative Caucus | |
|---|---|
| Co-Chairs |
Joseph Crowley Leonard Lance Orrin Hatch Amy Klobuchar |
| Founded | 2009 |
| Ideology | Bipartisan |
| Seats in the Senate |
6 / 100 |
| Seats in the House |
103 / 435 |
| Website | |
| http://rareadvocates.org/rarecaucus/ | |
Mission
The Rare Disease Legislative Caucus aims to voice constituent concerns about disease and health related issues, as well as encourage collaboration on ideas and solutions for those affected by rare or uncommon diseases. The Caucus also aims to facilitate conversations between the medical and patient community in order to establish a productive dialogue and build support for legislation in favor of citizens and families that are affected by rare diseases.[1]
History
The bipartisan Rare Disease Legislative Caucus was established in 2009 by original GOP Co-Chair Congressman Fred Upton (R-MI), who went on to become Chairman of the House Energy and Commerce Committee, and Congressman Joseph Crowley (D-NY). Jurisdictional issues, including Food and Drug Administration oversight as well as a myriad of issues related to healthcare reform and committee rules, required Rep. Upton to remove himself from leadership of all Caucuses in 2011 when he became Chair of the House Energy and Commerce Committee, though he remains a member of the Caucus. Upton recommended that Leonard Lance (R-NJ) take over as the Republican Co-Chair of the Caucus, where he now serves with Rep. Crowley.[1]
In 2016, both Republicans and Democrats from the Senate joined the Caucus, with Senator Orrin Hatch (R-UT) and Senator Amy Klobuchar (D-MN) becoming Co-Chairs.[1]
Current Status
As of 2016, the Rare Disease Legislative Caucus has over 100 members from 35 states. House Representatives make up the vast majority of Caucus, as the Senate only began sending members in 2016. 103 of the 109 current Caucus members are from the House.[1]
Members
House
* Denotes Co-Chair
Senate
* Denotes Co-Chair
| Member Name | State |
|---|---|
| Tom Cotton | AR |
| Orrin Hatch* | UT |
| Mark Kirk | IL |
| Amy Klobuchar* | MN |
| James Risch | ID |
| David Vitter | LA |
- 1 2 3 4 "Rare Disease Legislative Advocates". Rare Disease Legislative Advocates. Retrieved 2016-04-28.