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Home , Congressional caucus, Dutch Ruppersberger, Elissa Slotkin, Jake Auchincloss, Jeff Merkley, Kathy Manning

Join the Rare Disease Congressional

The bipartisan and bicameral Rare Disease Congressional Caucus is led by Representatives G. K. Butterfield (D-NC) and (R-FL), and Senators (R-MS) and (D-MN) to promote awareness of rare disease issues.

Background: There are over 7,000 rare disorders that together affect more than 30 million Americans and their families. Rare or orphan diseases are defined as diseases affecting fewer than 200,000 people in the . Many rare diseases are considered ultra-rare; some affect fewer than 100 people. Rare diseases include genetic diseases, rare cancers, tropical or neglected diseases, and many pediatric diseases. Many of these diseases are life-threatening and have no treatment options. The Orphan Drug Act was enacted in 1983 to incentivize pharmaceutical companies to develop therapies for diseases that have relatively small patient populations. Despite the success of the Orphan Drug Act, 93-95% of rare diseases still do not have a treatment approved by the Food and Drug Administration. 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 relatively few treatments have been approved, patients struggle with health insurance reimbursement and other coverage barriers that prohibit access to potentially lifesaving treatments. Solution: The Rare Disease Congressional Caucus helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address barriers to the development of and access to life-altering treatments. The Caucus gives a permanent voice to the rare disease community on . Working together we can find solutions that transform hope into therapies and cures.

For more information contact: RDLA: [email protected]. To join the Caucus contact: Sen. Klobuchar’s office: [email protected]; Sen. Wicker’s office: [email protected]; Rep. Bilirakis’ office: [email protected]; or Rep. Butterfield’s office: [email protected].

Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.

RARE DISEASE LEGISLATIVE ADVOCATES (A PROGRAM OF THE EVERYLIFE FOUNDATION) 1012 14TH STREET NW, SUITE 500, WASHINGTON DC 20005 OFFICE: 202-697-RARE (7273) WWW.RAREADVOCATES.ORG @RAREADVOCATES

Senate Co-Chairs: Senators Roger Wicker (MS) and Amy Klobuchar (MN) House Co-Chairs: Representatives G. K. Butterfield (NC-1) and Gus Bilirakis (FL-12)

HOUSE Brian Fitzpatrick PA-8 NJ-1 NJ-2 NV-2 NE-1 SC-5 CA-51 MA-4 AZ-7 DC Nydia Velazquez NY-7 IA-3 CA-3 Tom O’Halleran AZ-1 MO-2 NE-2 NJ-5 MS-4 Debbie Wasserman-Schultz Andy Barr KY-6 LA-6 NJ-6 FL-23 OH-3 Jaime Herrera-Beutler WA-3 CA-20 NJ-12 CA-7 Kevin Herns OK-1 Chris Pappas NH-1 AR-4 TX-30 CT-4 NJ-9 VA-10 Donald Beyer Jr. VA-8 CA-2 Donald Payne, Jr. NJ-10 PA-7 Gus Bilirakis* FL-12 GA-4 Scott Peters CA-52 Joe Wilson SC-2 , Jr. GA-2 SD-AL MN-03 Robert Wittman VA-1 DE NY-17 ME-1 KY-3 OR-1 David P. Joyce OH-14 CA-45 NY-1 AL-5 OH-9 FL-8 SENATE CA-26 CA-17 David Price NC-04 WY FL-16 WA-6 Mike Quigley IL-5 AR Michael Burgess TX-26 NJ-3 MD-8 IN IL-17 WI-3 NY-4 WA G.K. Butterfield* NC-1 IL-8 Martha Roby AL-2 WV CA-42 Darin LaHood IL-18 NC-7 Christopher Coons DE CA-24 Jim Langevin RI-2 C.A. AR Andre Carson IN-7 OH-5 MD-2 MT John Carter TX-31 NV-3 John Rutherford FL-4 Charles Grassley IA IL-6 NM-3 Mary Scanlon PA-5 ND OH-1 AZ-08 IL-9 Cindy Hyde-Smith MS CA-27 MI-09 IL-10 James Inhofe OK RI-1 CA-49 David Scott GA-13 John Kennedy LA , II MO-5 CA-33 NJ-11 ME TN-9 CA-19 ID-2 Amy Klobuchar* MN Jenniffer Gonzalez-Colon CA-47 NJ-8 Edward Markey MA PR-AL MO-3 MI-8 OR KY-1 Stephen Lynch MA-8 WA-9 KS Gerald Connolly VA-11 NJ-7 Chris Smith NJ-4 CA TN-5 NY-11 MO-8 MI CO-6 NY-12 PA-16 James Risch ID Rodney Davis IL-13 NY-18 FL-9 AZ KS-03 NC-6 CA-14 NH Peter DeFazio OR-4 FL-18 Chris Stewart UT-2 MN Diana DeGette CO-1 CA-6 OH-15 MI Rosa DeLauro CT-3 Michael McCaul TX-10 WA-10 MD Suzan DelBene WA-1 Jim McGovern MA-2 NY-03 Roger Wicker* MS Antonio R. Delgado NY-19 David McKinley WV-1 CA-15 FL-21 Cathy McMorris Rodgers WA-5 Glenn Thompson PA-5 MI-12 NY-6 MI-13 Mike Doyle PA-14 OK-2 NY-20 MN-6 MA-6 MA-3 CA-18 MA-1 MI-6