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 Doris Matsui (D-CA) 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 Doris Matsui
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 [2]

House

* Denotes Co-Chair

Member NameState/District
Mark Amodei NV-2
Jake Auchincloss MA-4
Don Bacon NE-2
Andy Barr KY-6
Joyce Beatty OH-3
Ami Bera CA-7
Donald Beyer Jr. VA-8
Stephanie Bice OK-5
Gus Bilirakis*FL-12
Sanford Bishop Jr. GA-2
Lisa Blunt Rochester DE-At-Large
Suzanne Bonamici OR-1
Julia Brownley CA-26
Vern Buchanan FL-16
Michael Burgess TX-26
Ken Calvert CA-41
Salud Carbajal CA-24
Tony Cárdenas CA-29
Andre Carson IN-7
John Carter TX-31
Sean Casten IL-6
Kathy Castor FL-14
Yadira Caraveo CO-8
Judy Chu CA-28
Emanuel Cleaver II MO-5
Ben Cline VA-6
Steve Cohen TN-9
Jenniffer González Colón PR-At-large
James Comer KY-1
Gerald Connolly VA-11
Jason Crow CO-6
Sharice Davids KS-03
Donald Davis NC-01
Diana DeGette CO-01
Rosa DeLauro CT-3
Suzan DelBene WA-1
Mark DeSaulnier CA-10
Debbie Dingell MI-6
Lloyd Doggett TX-37
Jeff Duncan SC-3
Tom Emmer MN-6
Anna Eshoo CA-18
Brian Fitzpatrick PA-1
Lizzie Fletcher TX-07
Mike Flood NE-1
Bill Foster IL-11
Ruben Gallego AZ-3
John Garamendi CA-3
Josh Gottheimer NJ-5
Garret Graves LA-6
Raul Grijalva AZ-7
Glenn Grothman WI-6
Brett Guthrie KY-2
Kevin Hern OK-1
Jim Himes CT-4
Richard Hudson NC-08
Jared Huffman CA-2
Dusty Johnson SD-AL
Hank Johnson GA-4
David P. Joyce OH-14
Marcy Kaptur OH-9
Thomas Howard Kean NJ-7
Bill Keating MA-9
Ro Khanna CA-17
Derek Kilmer WA-6
Andy Kim NJ-3
Raja Krishnamoorthi IL-8
Darin LaHood IL-16
John Larson CT-1
Bob Latta OH-5
Susie Lee NV-3
Teresa Leger Fernandez NM-3
Debbie Lesko AZ-08
Mike Levin CA-49
Ted Lieu CA-36
Zoe Lofgren CA-19
Blaine Luetkemeyer MO-9
Stephen F. Lynch MA-8
Nancy Mace SC-1
Nicole Malliotakis NY-11
Kathy Manning NC-6
Brian Mast FL-21
Doris Matsui CA-6
Michael McCaul TX-10
Morgan McGarvey KY-3
Jim McGovern MA-2
Cathy McMorris Rodgers WA-5
Grace Meng NY-6
Carol Miller WV-1
Mariannette Miller-Meeks IA-2
Barry Moore AL-02
Seth Moulton MA-6
Kevin Mullin CA-15
Jerrold Nadler NY-12
Richard Neal MA-1
Joe Neguse CO-2
Donald Norcross NJ-1
Ralph Norman SC-5
Eleanor Holmes Norton DC
Frank Pallone NJ-6
Jimmy Panetta CA-19
Chris Pappas NH-01
Bill Pascrell NJ-9
Scott Peters CA-52
Dean Phillips MN-03
Chellie Pingree ME-1
Katie Porter CA-45
Bill Posey FL-8
Mike Quigley IL-5
Jamie Raskin MD-8
Mike Rogers AL-3
Deborah Ross NC-2
David Rouzer NC-7
C.A. Dutch Ruppersberger MD-2
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

Senate

* Denotes co-chair

Member NameState
John Barrasso WY
John Boozman AR
Mike Braun IN
Maria Cantwell WA
Shelley Moore Capito WV
Chris Coons DE
Tom Cotton AR
Steve Daines MT
Chuck Grassley IA
Cindy Hyde-Smith MS
John Kennedy LA
Angus King ME
Amy Klobuchar* MN
James Lankford OK
Ed Markey MA
Jeff Merkley OR
Jerry Moran KS
Markwayne Mullin OK
Alex Padilla CA
Gary Peters MI
James Risch ID
Kyrsten Sinema AZ
Jeanne Shaheen NH
Tina Smith MN
Debbie Stabenow MI
Jon Tester MT
Chris Van Hollen MD
Rafael Warnock GA
Roger Wicker* MS

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References

  1. 1 2 3 4 "Rare Disease Legislative Advocates". Rare Disease Legislative Advocates. Retrieved 2016-04-28.
  2. "Rare Disease Congressional Caucus". Every Life Foundation for Rare Diseases. Retrieved 20 November 2024.