Rare Disease Caucus

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The Rare Disease Legislative Caucus is a bipartisan congressional caucus open to all members of the United States House and Senate. The caucus is currently co-chaired by Representatives G.K. Butterfield (D-NC) and Gus Bilirakis (R-FL) and Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN). The caucus was founded and Chaired by Congressman Fred Upton (R-MI) and Joseph Crowley in 2009.

Contents

The caucus works to advance legislation and education regarding specialized and uncommon health issues and diseases, and to promote patient advocacy. The caucus works closely with the Rare Disease Legislative Advocates group.

Rare Disease Legislative Caucus
Co-Chairs G. K. Butterfield
Gus Bilirakis
Roger Wicker
Amy Klobuchar
Founded2009
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 represent constituent concerns about disease and health-related issues, influence legislation to assist citizens and families affected by rare diseases, and to facilitate conversations between the medical and patient communities. [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 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

Full member listing

House

* Denotes Co-Chair

Member NameState/District
Mark Amodei NV-2
Brad Ashford NE-2
Lou Barletta PA-11
Andy Barr KY-6
Eddie Bernice Johnson TX-30
Donald Beyer Jr. VA-8
Gus Bilirakis FL-12
Marsha Blackburn TN-7
Rod Blum IA-1
Suzanne Bonamici OR-1
Mo Brooks AL-5
Julia Brownley CA-26
Vern Buchanan FL-16
Michael Burgess TX-26
Cheri Bustos IL-17
G.K. Butterfield NC-1
Mike Capuano MA-7
Andre Carson IN-7
John Carter TX-31
David Cicilline RI-1
Barbara Comstock VA-10
Gerald Connolly VA-11
Ryan Costello PA-6
Joseph Crowley*NY-14
Rodney Davis IL-13
Jeff Denham CA-10
Peter DeFazio OR-5
Charlie Dent PA-15
Ted Deutch FL-21
Robert Dold IL-10
John Duncan, Jr. TN-2
Eliot Engel NY-16
Anna Eshoo CA-18
Stephen Fincher TN-8
Michael G. Fitzpatrick PA-8
Jeff Fortenberry NE-1
John Garamendi CA-3
Richard Hanna NY-22
Gregg Harper MS-3
Denny Heck WA-10
Jaime Herrera-Beutler WA-3
Jim Himes CT-4
Jared Huffman CA-2
Darrell Issa CA-49
Lynn Jenkins KS-2
Hank Johnson GA-4
David P. Joyce OH-14
Marcy Kaptur OH-9
Joseph Kennedy III MA-4
Peter King NY-2
John Kline MN-2
Leonard Lance* NJ-7
Dan Lipinski IL-3
Frank LoBiondo NJ-2
Dave Loebsack IA-2
Zoe Lofgren CA-19
Tom MacArthur NJ-3
Carolyn Maloney NY-12
Sean Patrick Maloney NY-18
Kenny Marchant TX-24
Tom Marino PA-10
Doris Matsui CA-6
Michael McCaul TX-10
Jim McGovern MA-2
David McKinley WV-1
Luke Messer IN-6
Tim Murphy PA-18
Richard Neal MA-1
Rick Nolan MN-8
Donald Norcross NJ-1
Frank Pallone NJ-6
Bill Pascrell NJ-9
Erik Paulsen MN-3
Donald Payne, Jr. NJ-10
Scott Peters CA-52
Collin Peterson MN-7
Joseph Pitts PA-16
Jared Polis CO-2
Bill Posey FL-8
Mike Quigley IL-5
Reid Ribble WI-8
Ilena Ros-Lehtinen FL-27
Peter Roskam IL-6
David Rouzer NC-7
Loretta Sanchez CA-46
Jan Schakowsky IL-9
David Scott GA-13
Pete Sessions TX-32
Albio Sires NJ-8
Adam Smith WA-9
Chris Smith NJ-4
Steve Stivers OH-15
Eric Swalwell CA-15
Pat Tiberi OH-12
Fred Upton MI-6
Chris Van Hollen MD-8
Juan Vargas CA-51
Greg Walden OR-2
Tim Walz MN-1
Debbie Wasserman-Schultz FL-23
Bonnie Watson Coleman NJ-12
Ed Whitfield KY-1
Robert Wittman VA-1
John Yarmuth KY-3
Kevin Yoder KS-3

Senate

* Denotes co-chair

Member NameState
Tom Cotton AR
Orrin Hatch* UT
Mark Kirk IL
Amy Klobuchar* MN
James Risch ID
David Vitter LA

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References

  1. 1 2 3 4 "Rare Disease Legislative Advocates". Rare Disease Legislative Advocates. Retrieved 2016-04-28.