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 and Representative Leonard Lance from the House of Representatives and Senator Orrin Hatch and Senator Amy Klobuchar from the Senate. The caucus was founded and Chaired by Congressman Fred Upton 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.

Mission

The Rare Disease Legislative Caucus aims to represent constituent concerns about disease and health related issues. It also works toward collaboration on ideas and solutions for those affected by rare or uncommon diseases, and to facilitate conversations between the medical and patient community. The caucus works to influence legislation to assist citizens and families affected y rare diseases.

History

The bipartisan Rare Disease Legislative Caucus was established in 2009 by original GOP Co-Chair Congressman Fred Upton, who went on to become Chairman of the House Energy and Commerce Committee, and Congressman Joseph Crowley. 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 take over as the Republican Co-Chair of the Caucus, where he now serves with Rep. Crowley.
In 2016, both Republicans and Democrats from the Senate joined the caucus, with Senator Orrin Hatch and Senator Amy Klobuchar 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

Full member listing

House

* Denotes Co-Chair
Member NameState/District
Mark AmodeiNV-2
Brad AshfordNE-2
Lou BarlettaPA-11
Andy BarrKY-6
Eddie Bernice JohnsonTX-30
Donald Beyer Jr.VA-8
Gus BilirakisFL-12
Marsha BlackburnTN-7
Rod BlumIA-1
Suzanne BonamiciOR-1
Mo BrooksAL-5
Julia BrownleyCA-26
Vern BuchananFL-16
Michael BurgessTX-26
Cheri BustosIL-17
G.K. ButterfieldNC-1
Mike CapuanoMA-7
Andre CarsonIN-7
John CarterTX-31
David CicillineRI-1
Barbara ComstockVA-10
Gerald ConnollyVA-11
Ryan CostelloPA-6
Joseph Crowley*NY-14
Rodney DavisIL-13
Jeff DenhamCA-10
Peter DeFazioOR-5
Charlie DentPA-15
Ted DeutchFL-21
Robert DoldIL-10
John Duncan, Jr.TN-2
Eliot EngelNY-16
Anna EshooCA-18
Stephen FincherTN-8
Michael G. FitzpatrickPA-8
Jeff FortenberryNE-1
John GaramendiCA-3
Richard HannaNY-22
Gregg HarperMS-3
Denny HeckWA-10
Jaime Herrera-BeutlerWA-3
Jim HimesCT-4
Jared HuffmanCA-2
Darrell IssaCA-49
Lynn JenkinsKS-2
Hank JohnsonGA-4
David P. JoyceOH-14
Marcy KapturOH-9
Joseph Kennedy IIIMA-4
Peter KingNY-2
John KlineMN-2
Leonard Lance*NJ-7
Dan LipinskiIL-3
Frank LoBiondoNJ-2
Dave LoebsackIA-2
Zoe LofgrenCA-19
Tom MacArthurNJ-3
Carolyn MaloneyNY-12
Sean Patrick MaloneyNY-18
Kenny MarchantTX-24
Tom MarinoPA-10
Doris MatsuiCA-6
Michael McCaulTX-10
Jim McGovernMA-2
David McKinleyWV-1
Luke MesserIN-6
Tim MurphyPA-18
Richard NealMA-1
Rick NolanMN-8
Donald NorcrossNJ-1
Frank PalloneNJ-6
Bill PascrellNJ-9
Erik PaulsenMN-3
Donald Payne, Jr.NJ-10
Scott PetersCA-52
Collin PetersonMN-7
Joseph PittsPA-16
Jared PolisCO-2
Bill PoseyFL-8
Mike QuigleyIL-5
Reid RibbleWI-8
Ilena Ros-LehtinenFL-27
Peter RoskamIL-6
David RouzerNC-7
Loretta SanchezCA-46
Jan SchakowskyIL-9
David ScottGA-13
Pete SessionsTX-32
Albio SiresNJ-8
Adam SmithWA-9
Chris SmithNJ-4
Steve StiversOH-15
Eric SwalwellCA-15
Pat TiberiOH-12
Fred UptonMI-6
Chris Van HollenMD-8
Juan VargasCA-51
Greg WaldenOR-2
Tim WalzMN-1
Debbie Wasserman-SchultzFL-23
Bonnie Watson ColemanNJ-12
Ed WhitfieldKY-1
Robert WittmanVA-1
John YarmuthKY-3
Kevin YoderKS-3

Senate

* Denotes co-chair
Member NameState
Tom CottonAR
Orrin Hatch*UT
Mark KirkIL
Amy Klobuchar*MN
James RischID
David VitterLA