# Rare Disease Caucus

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.
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.

## 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.

## 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.
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.

### 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.

## Members
### House

* Denotes Co-Chair
| Member Name | State/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 |
| John Rutherford | FL-5 |
| Maria Elvira Salazar | FL-27 |
| Mary Gay Scanlon | PA-5 |
| Jan Schakowsky | IL-9 |
| Brad Schneider | IL-10 |
| David Scott | GA-13 |
| Mikie Sherrill | NJ-11 |
| Mike Simpson | ID-2 |
| Elissa Slotkin | MI-7 |
| Adam Smith | WA-9 |
| Chris Smith | NJ-4 |
| Jason Smith | MO-8 |
| Lloyd Smucker | PA-11 |
| Darren Soto | FL-9 |
| Abigail Spanberger | VA-7 |
| Melanie Stansbury | NM-1 |
| Bryan Steil | WI-1 |
| Haley Stevens | MI-11 |
| Marilyn Strickland | WA-10 |
| Eric Swalwell | CA-15 |
| Glenn Thompson | PA-15 |
| Rashida Tlaib | MI-12 |
| Paul Tonko | NY-20 |
| Lori Trahan | MA-3 |
| David Trone | MD-6 |
| Jeff Van Drew | NJ-2 |
| Juan Vargas | CA-51 |
| Nydia Velazquez | NY-7 |
| Ann Wagner | MO-2 |
| Debbie Wasserman-Schultz | FL-23 |
| Bonnie Watson Coleman | NJ-12 |
| Bruce Westerman | AR-4 |
| Jennifer Wexton | VA-10 |
| Susan Wild | PA-7 |
| Joe Wilson | SC-2 |
| Robert Wittman | VA-1 |

### Senate

* Denotes co-chair
| Member Name | State |
| 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 |