The Rare Disease Congressional Caucus

Established in 2009, the Rare Disease Congressional Caucus is bipartisan (comprising both Democrats and Republicans) and bicameral (comprising both Representatives and Senators). The original GOP Co-Chair Congressman Fred Upton (R-MI) has become Chairman of the House Energy and Commerce Committee, arguably the most powerful House committee. Jurisdictional issues within the committee include Food and Drug Administration oversight as well as a myriad of issues related to healthcare reform. Committee rules require that Rep. Upton remove himself from all Caucuses. While Upton is not able to serve as the Rare Disease Caucus Co-Chair, he remains passionate about helping patients with rare diseases and helping us seek legislative solutions. He will continue to be a trusted ally to the rare disease community. Upton recommended that Leonard Lance (R-NJ) take over as the Republican Co-Chair of the Caucus.

Full House Member List listed at: Rareadvocates.org/rarediseasecaucus

Rare Disease Congressional Caucus Briefing: Urgent Healthcare Policy Needs of the Rare Disease Community

Rare Disease Legislative Advocates & the National MPS Society in coordination with Rare Disease Congressional Caucus Co-Chairs:
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), held a briefing,

Urgent Healthcare Policy Needs of the Rare Disease Community

Thursday, February 26th, 2015

Russell Caucus Room

Lunch Provided by event sponsors AbbVie, Alexion, Raptor, & Shire
Moderator:  Anthony J. Castaldo, President, US Hereditary Angiodema Association (HAEA)
  • Limited Access to Specialists in Private Insurance Networks, Stephanie Bozarth, National MPS Society
  • Coverage Gaps for Medically Necessary Foods, Nicole Dreyer-Gavin, PKU Parent Advocate
  • Medicare Coverage Challenges for Cystinosis Patients, Kristina Broadbelt, Patient Advocate
  • Step-wise Therapies: Negative Implications for the Health of Rare Disease Patients, Anthony J. Castaldo, President, US Heriditary Angiodema Association

 VIEW THE BRIEFING HERE

Briefing Hosted by:

 

Rare Disease Caucus Election Results

During the November 2014 Midterm Elections, members of the Rare Disease Congressional Caucus lost 2 elections to the House:

  • Bruce Braley (D) IA-1
  • Carol Shea-Porter (D) NH-1

8 members did not seek re-election to the House:

  • Spencer Bachus (R) AL-6
  • Phil Gingrey (R) GA-11
  • Tim Griffin (R) AR-2
  • Rush Holt (D) NJ-12
  • Tom Latham (R) IA-3
  • Jon Runyan (R) NJ-3
  • Henry Waxman (D) CA-33
  • Frank Wolf (R)

To see complete election results of all Caucus Members & incoming Representatives read more

Read more

Nov. 13 Caucus Briefing

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Rare Disease Legislative Advocates and EB Research Partnership in coordination with Rare Disease Congressional Caucus Co-Chairs
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on

“Creating Economic Incentives to Spur the Development of Treatments for Ebola and Other Life-Threatening Rare Diseases”

Thursday, November 13, 2014
12:00 noon – 1:30 pm
Rayburn House Office Building, Room: B-318

Congressional Caucus Briefing – Sept. 17


Rare Disease Legislative Advocates, Kids v Cancer, & The ALS Association in coordination with 
Rare Disease Congressional Caucus Co-Chairs
Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing

“Implementation of Rare Disease Provisions in FDASIA”

 Wednesday September 17, 2014
12:00 pm – 1:00 pm
Rayburn House Office Building, Room B-318

Lunch will be provided by event sponsors Amicus, Alexion & Shire

Agenda:

   Moderated by Steve Gibson, The ALS Association
  • Sec. 901. Enhancement of accelerated patient access to new medical treatments: Accelerated Approval for rare diseases, Emil Kakkis, MD PhD, EveryLife Foundation for Rare Diseases
  • Sec. 902. Breakthrough therapies, Shanthi Ganeshan, PhD, Novartis
  • Sec. 903. Consultation with external experts on rare diseases, Stephanie Krenrich, Cystic Fibrosis Foundation
  • Sec. 908. Rare pediatric disease priority review voucher incentive program, Nancy Goodman, Kids v Cancer
  • Sec. 1137. Patient participation in medical product discussions, Allison Greenstein, Narcolepsy Network
  • FDA’s Strategic Plan for Accelerating the Development of Therapies for Pediatric Rare Diseases – Dr. Gayatri Rao, Office of Ophan Product Development FDA
  • Emerging Biotech Perspective of the combined impact of FDASIA – Jayne Gershkowitz, Amicus Therapeutics
Limited Seating, RSVP to attend:
Briefing Hosted by:

Rare Disease Congressional Caucus Briefing

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Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs

Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on

Implementation of the Rare Disease Provisions in the
Food & Drug Administration Safety and Innovation Act of 2012 (FDASIA) PL 112-144

Wednesday, September 17, 2014

12:00 noon – 1:30 pm

Rayburn House Office Building, Room: B-318

Lunch Provided by event sponsors Amicus & Shire

Agenda:

  • Sec. 901. Enhancement of accelerated patient access to new medical treatments: Accelerated Approval for rare diseases, Emil Kakkis, MD PhD, EveryLife Foundation for Rare Diseases
  • Sec. 902. Breakthrough therapies, TBD, Novartis Therapeutics
  • Sec. 903. Consultation with external experts on rare diseases, Stephanie Krenrich, Cystic Fibrosis Foundation
  • Sec. 908. Rare pediatric disease priority review voucher incentive program, Nancy Goodman, Kids v Cancer
  • Sec. 1137. Patient Participation in Medical Product Discussions, Allison Greenstein, Narcolepsy Patient Advocate
  • FDA’s Strategic Plan for Accelerating the Development of Therapies for Pediatric Rare Diseases – TBD, FDA
  • Emerging Biotech Perspective of the combined impact of FDASIA, TBD, Amicus Therapeutics

Limited Seating, RSVP to attend: To register click here.

Briefing Hosted by:

Sept. Caucus briefing logo mashup

Meet the Rare Disease Congressional Caucus

Full House Member List with Committee Assignments:

1. Spencer Bachus (R-AL): Judiciary; Financial Oversight
2. Lou Barletta (R-PA): Education & Workforce; Homeland Security; Judiciary
3. Gus Bilirakis (R-FL): Energy & Commerce; Veterans’ Affairs
4. Marsha Blackburn (R-TN): Budget; Energy & Commerce
5. Suzanne Bonamici (D-OR): Education & the Workforce; Science, Space & Technology
6. Bruce Braley (D-IA): Energy & Commerce
7. Mo Brooks (R-AL): Armed Service; Foreign Affairs; Science, Space & Technology
8. Julia Brownley (D-CA): Science, Space & Technology; Veterans’ Affairs
9. Michael Burgess (R-TX): Energy & Commerce; Rules
10. G.K. Butterfield (D-NC): Energy & Commerce
11. Shelley Moore Capito (R-WV): Financial Services; Transportation & Infrastructure
12. Mike Capuano (D-MA): Ethics; Financial Services; Transportation & Infrastructure
13. Andre Carson (D-IN): Armed Services; Transportation & Infrastructure
14. John Carter (R-TX): Appropriations
15. Gerald Connolly (D-VA): Foreign Affairs; Oversight & Government Reform
16. Joe Crowley (D-NY): Ways & Means; Dem. Caucus Vice-Chair
17. Rodney L. Davis (R-IL): Oversight and Government Reform; Ways and Means
18. Charlie Dent (R-PA): Appropriations; Ethics
19. Eliot Engel (D-NY): Energy & Commerce; Foreign Affairs (Rnk. Mem.)
20. Anna Eshoo (D-CA): Energy & Commerce
21. Stephen Fincher (R-TN): Agriculture; Financial Services
22. Michael G. Fitzpatrick (R-PA): Financial Services
23.  Jeff Fortenberry (R-NE): Appropriations
24. Jim Gerlach (R-PA): Ways & Means
25. Phil Gingrey (R-GA): Energy & Commerce; House Administration
26. Tim Griffin (R-AR): Agriculture; Transportation
27. Richard Hanna (R-NY): Small Business; Transportation & Infrastructure; Joint Economic
28. Rush Holt (D-NJ): Education & the Workforce; Natural Resources
29. Jared Huffman (D-CA): Budget, Natural Resources
30. Darrell Issa (R-CA): Judiciary; Oversight & Government Reform (Chair)
31. Eddie Bernice Johnson (D-TX): Transportation and Infrastructure; Science and Technology
32. Hank Johnson (D-GA): Armed Services; Judiciary
33. David P. Joyce (R-OH): Appropriations
34. Marcy Kaptur (D-OH): Appropriations
35. Peter King (R-NY): Financial Services; Homeland Security; Permanent Select Committee on Intelligence
36. John Kline (R-MN): Armed Services; Education & the Workforce (Chair)
37. Leonard Lance (R-NJ): Energy & Commerce
38. Tom Latham (R-IA): Appropriations
39. Dan Lipinski (D-IL): Science & Technology
40. Dave Loebsack (D-IA): Armed Services; Education & the Workforce
41. Zoe Lofgren (D-CA): House Administration; Judiciary; Science, Space & Technology
42. Carolyn Maloney (D-NY): Financial Services; Oversight & Government Reform; Joint Economic
43. Sean Patrick Maloney (D-NY): Agriculture; Transportation and Infrastructure
44. Kenny Marchant (R-TX): Education and the Workforce; Ways and Means
45. Tom Marino (R-PA): Foreign Affairs; Homeland Security; Judiciary
46. Carolyn McCarthy (D-NY): Education & the Workforce; Financial Services
47. Michael McCaul (R-TX): Foreign Affairs; Homeland Security (Chair); Science, Space & Tech
48. Jim McGovern (D-MA): Agriculture; Rules
49. David McKinley (R-WV): Energy & Commerce
50. James Moran (D-VA): Appropriations
51. Richard Neal (D-MA): Ways & Means
52. Bill Pascrell (D-NJ): Budget; Ways & Means
53. Erik Paulsen (R-MN): Ways & Means, Joint Economic
54. Donald Payne, Jr. (D-NJ): Homeland Security, Small Business
55. Gary Peters (D-MI): Financial Services
56. Joseph Pitts (R-PA): Energy & Commerce
57. Jared Polis (D-CO): Education and the Workforce; Rules
58. Bill Posey (R-FL): Financial Services; Science, Space & Technology
59. Mike Quigley (D-IL): Appropriations
60. Reid Ribble (R-WI): Agriculture; Budget; Transportation and Infrastructure
61. Ilena Ros-Letinen (D-FL): Rules; Foreign Affairs
62. Peter Roskam (R-IL): Ways & Means
63. John Runyan (R-NJ): Armed Services; Natural Resources; Veterans’ Affairs
64. Loretta Sanchez (D-CA): Armed Services; Homeland Security; Joint Economic
65. Jan Schakowsky (D-IL): Energy and Commerce; Permanent Select Committee on Intelligence
66. David Scott (D-GA): Agriculture; Financial Services
67. Pete Sessions (R-TX): Rules, Chairman
68. Carol Shea-Porter (D-NH): Armed Services; Natural Resources
69. Brad Sherman (D-CA): Financial Services; Foreign Affairs
70. Adam Smith (D-WA): Armed Services (Rank. Mem.)
71. Chris Smith (R-NJ) : Foreign Affairs
72. Steve Stivers (R-OH):
Financial Services
73. Pat Tiberi (R-OH):
Ways & Means
74. Fred Upton (R-MI):
Energy & Commerce (Chair)
75. Debbie Wasserman-Schultz (D-FL):
Appropriations
76. Henry Waxman (D-CA):
Energy & Commerce
77. Robert Wittman (R-VA):
Armed services; Natural Resources
78. Frank Wolf (R-VA):
Appropriations
79. John Yarmuth (D-KY):
Budget; Energy & Commerce

RDLA is working to formalize the Caucus in the Senate – check back for updates!

Sept. 12: Rare Disease Congressional Caucus Briefing Videos

RDCC-Horizontal-CMYKRDLA and Shire in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY) hosted a briefing on Thursday, September 12, 2013 

Orphans In Jeopardy:  Threats to the Development of Rare Disease Treatments 

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Crohn’s & Colitis Caucus Briefing: Patient Access to Affordable Treatments

May 23rd • Noon • Lunch Provided
Rayburn House Office Building 2168

“Patient Access to Affordable Treatments” will provide attendees with an update on the Congressional Crohn’s & Colitis Caucus, as well as a dialogue with our panel of experts from the scientific community on patient access to drug treatments.

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April 16th Rare Disease Congressional Caucus Briefing

Rare Disease Legislative Advocates and Novartis, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY)  will host a briefing on “Medical Innovation for Rare Diseases: Challenges that Our Country Must Address.”  Tuesday, April 16, 2013 from 12:00 PM – 1:00 PM in Rayburn B-318

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Rare Disease Caucus Chairs Recognize Rare Disease Day

(Washington, D.C.) – Today, Reps. Joe Crowley (NY-14) and Leonard Lance (NJ-7), co-chairs of the Congressional Rare Disease Caucus, issued the following statement in recognition of Rare Disease Day: 

“Today, we join the millions of patients, their families, and the global health community in observing Rare Disease Day.

“For the 30 million Americans suffering from a rare disease, half of whom are children, medical advancements can’t come soon enough. Most rare diseases have no current treatment available, and many are not even studied by researchers.

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