Please Join the Rare Disease Congressional Caucus
The bipartisan Rare Disease Congressional Caucus is led by Representatives Leonard Lance (R-NJ) and Joseph Crowley (D-NY) to promote awareness of rare disease issues. Our goal for the Caucusis to grow House membership and formalize the Caucus in the Senate.
Rare Disease Legislative Advocates (RDLA) is a collaborative organization designed to support the advocacy of all rare disease groups. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. RDLA’s objectiveis to grow the patient advocacy community and work collectively to ensure that the many voices of patients with rare diseases have an opportunity to be heard on Capitol Hill.
Contact: Julia Jenkins, Executive Director, (202) 803-6047 or
Background: There are more than 7,000 rare disorders that together affect more than 25 million Americans and their families. One in 10 Americanshas a rare disease. The Orphan Drug Act was enacted in 1983 to encourage pharmaceutical companies to develop drugs for diseases that have relatively small patient populations. Rare or orphan diseases are defined as diseases affecting fewer than 200,000 people in the U.S. More than 80% of rare diseases are considered ultra rare, affecting fewer than 6,000 people, some diseases affect fewer than 100. Rare diseases include rare cancers, tropical or neglected diseases, genetic diseases and many pediatric diseases and cancers. Many of these diseases are life threatening and have no treatment options.
Despite the success of the Orphan Drug Act there have been fewer than 450 treatments for less than 300 diseasesapprovedfor marketing by the FDA in the last 30 years. The science exists for many of these diseases to be treated; however, treatments may never be developed because of roadblocks in the development process, such as a lack of investment and a challenging regulatory environment. Additionally, while a few treatments have become available for some, patients struggle with insurance companies and government programs to afford these lifesaving treatments.
Solution: TheRare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community - patients, physicians, scientists, and industry, and creates opportunities to address roadblocks in access toand development of crucial treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Working together, we can find solutions that turn hope into treatments.
To join the Caucus, please contact:
Molly McDonnell, Office of Rep. Lance (R-NJ): (202) 225-5361
Nicole Cohen, Office of Rep. Crowley (D-NY):(202) 225-3965
Bipartisan Caucus Membership:Representative Lou Barletta (PA-11)
Representative Andy Barr (KY-6)
Representative Eddie Bernice Johnson (TX-30)
Representative Donald Beyer Jr. (VA-8)
Representative Gus Bilirakis (FL-12)
Representative Marsha Blackburn (TN-7)
Representative Suzanne Bonamici (OR-1)
Representative Bruce Braley (IA-1)
Representative Mo Brooks (AL-5)
Representative Julia Brownley (CA-26)
Representative Michael Burgess (TX-26)
Representative Cheri Bustos (IL-7)
Representative G.K. Butterfield (NC-1)
Representative Mike Capuano (MA-8)
Representative Andre Carson (IN-7)
Representative John Carter (TX-31)
Representative Barbara Comstock (VA-10)
Representative Gerald Connolly (VA-11)
Representative Ryan Costello (PA-6)
Representative Joseph Crowley (NY-7)*
Representative Rodney Davis (IL-13)
Representative Jeff Denham (CA-10)
Representative Charlie Dent (PA-15)
Representative Robert Dold(IL-10)
Representative John Duncan, Jr.(TN-2)
Representative Eliot Engel (NY-17)
Representative Anna Eshoo (CA-14)
Representative Stephen Fincher (TN-8)
Representative Michael Fitzpatrick (PA-8)
Representative Jeff Fortenberry (NE-1)
Representative Jim Gerlach (PA-6)
Representative Tim Griffin (AZ-2)
Representative Richard Hanna (NY-24)
Representative Gregg Harper (MS-3)
Representative Jaime Herrera Butler (WA-3)
Representative Jared Huffman (CA-2)
Representative Darrell Issa (CA- 49)
Representative Hank Johnson (GA-4)
Representative David P. Joyce (OH-14)
Representative Marcy Kaptur (OH-9)
Representative Peter King (NY-3)
Representative John Kilne (MN-2) / Representative Leonard Lance (NJ-7)*
Representative Tom Latham (IA-3)
Representative Dan Lipinski (IL-3)
Representative Frank LiBiondo (NJ-2)
Representative Dave Loebsack (IA-2)
Representative Zoe Lofgren (CA-16)
Representative Carolyn Maloney (NY-14)
Representative Sean Patrick Maloney (NY-18)
Representative Kenny Marchant (TX-24)
Representative Tom Marino (PA-10)
Representative Doris Matsui (CA-6)
Representative Michael McCaul (TX-10)
Representative Jim McGovern (MA-2)
Representative David McKinley (WV-1)
Representative Luke Messer (IN-6)
Representative Tim Murphy (PA-18)
Representative Richard Neal (MA-1)
Representative Rick Nolan (MN-8)
Representative Bill Pascrell (NJ-8)
Representative Erik Paulsen (MN-3)
Representative Donald Payne, Jr (NJ-10)
Representative Joseph Pitts (PA-16)
Representative Jared Polis (CO-2)
Representative Bill Posey (FL-15)
Representative Mike Quigley (IL-5)
Representative Reid Ribble (WI 8)
Representative Peter Roskam (IL-6)
RepresentativeIlena Ros-Lehtinen (FL-27)
Representative Loretta Sanchez (CA-47)
Representative Jan Schakowsky (IL-9)
Representative David Scott (GA-13)
Representative Pete Sessions (TX-32)
RepresentativeAlbio Sires (NJ-8)
Representative Adam Smith (WA-9)
Representative Chris Smith (NJ-4)
Representative Steve Stivers (OH-15)
Representative Pat Tiberi (OH-12)
Representative Fred Upton (MI-6)
RepresentativeChris Van Hollen (MD-8)
Representative Tim Walz(MN-1)
Representative Debbie Wasserman-Schultz (FL-23)
Representative Robert Wittman (VA-1)
Representative John Yarmouth (KY-3)
1101 14th Street NW, Suite 700 • Washington • DC 20005