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 Caucus is 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 objective is 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 [email protected]

Background: There are more than 7,000 rare disorders that together affect more than 25 million Americans and their families. One in 10 Americans has 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 diseases approved for 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: The Rare 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 to and 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): [email protected] (202) 225-5361 Nicole Cohen, Office of Rep. Crowley (D-NY): [email protected] (202) 225-3965 1101 14th Street NW, Suite 700 • Washington • DC 20005 www.RareAdvocates.org

Bipartisan Caucus Membership:

Representative (PA-11) Representative Leonard Lance (NJ-7)* Representative Andy Barr (KY-6) Representative Tom Latham (IA-3) Representative Eddie Bernice Johnson (TX-30) Representative Dan Lipinski (IL-3) Representative Donald Beyer Jr. (VA-8) Representative Frank LiBiondo (NJ-2) Representative Gus Bilirakis (FL-12) Representative Dave Loebsack (IA-2) Representative Marsha Blackburn (TN-7) Representative Zoe Lofgren (CA-16) Representative Suzanne Bonamici (OR-1) Representative Carolyn Maloney (NY-14) Representative Bruce Braley (IA-1) Representative Sean Patrick Maloney (NY-18) Representative Mo Brooks (AL-5) Representative Kenny Marchant (TX-24) Representative Julia Brownley (CA-26) Representative (PA-10) Representative Michael Burgess (TX-26) Representative Doris Matsui (CA-6) Representative Cheri Bustos (IL-7) Representative Michael McCaul (TX-10) Representative G.K. Butterfield (NC-1) Representative Jim McGovern (MA-2) Representative Mike Capuano (MA-8) Representative David McKinley (WV-1) Representative Andre Carson (IN-7) Representative Luke Messer (IN-6) Representative John Carter (TX-31) Representative Tim Murphy (PA-18) Representative Barbara Comstock (VA-10) Representative Richard Neal (MA-1) Representative Gerald Connolly (VA-11) Representative Rick Nolan (MN-8) Representative (PA-6) Representative Bill Pascrell (NJ-8) Representative Joseph Crowley (NY-7)* Representative Erik Paulsen (MN-3) Representative Rodney Davis (IL-13) Representative Donald Payne, Jr (NJ-10) Representative Jeff Denham (CA-10) Representative Joseph Pitts (PA-16) Representative (PA-15) Representative Jared Polis (CO-2) Representative Robert Dold (IL-10) Representative Bill Posey (FL-15) Representative John Duncan, Jr. (TN-2) Representative Mike Quigley (IL-5) Representative Eliot Engel (NY-17) Representative Reid Ribble (WI 8) Representative Anna Eshoo (CA-14) Representative Peter Roskam (IL-6) Representative Stephen Fincher (TN-8) Representative Ilena Ros-Lehtinen (FL-27) Representative Michael Fitzpatrick (PA-8) Representative Loretta Sanchez (CA-47) Representative Jeff Fortenberry (NE-1) Representative Jan Schakowsky (IL-9) Representative (PA-6) Representative David Scott (GA-13) Representative Tim Griffin (AZ-2) Representative Pete Sessions (TX-32) Representative Richard Hanna (NY-24) Representative Albio Sires (NJ-8) Representative Gregg Harper (MS-3) Representative Adam Smith (WA-9) Representative Jaime Herrera Butler (WA-3) Representative Chris Smith (NJ-4) Representative Jared Huffman (CA-2) Representative Steve Stivers (OH-15) Representative Darrell Issa (CA- 49) Representative Pat Tiberi (OH-12) Representative Hank Johnson (GA-4) Representative Fred Upton (MI-6) Representative David P. Joyce (OH-14) Representative Chris Van Hollen (MD-8) Representative Marcy Kaptur (OH-9) Representative Tim Walz (MN-1) Representative Peter King (NY-3) Representative Debbie Wasserman-Schultz (FL-23) Representative John Kilne (MN-2) Representative Robert Wittman (VA-1) Representative John Yarmouth (KY-3) 1101 14th Street NW, Suite 700 • Washington • DC 20005 www.RareAdvocates.org

1101 14th Street NW, Suite 700 • Washington • DC 20005 www.RareAdvocates.org