3.0.0 4228 2022-11-01T13:50:07Z 2022-11-01T13:50:07Z House HR 2019-09-06 116 [Congressional Record Volume 165, Number 142 (Friday, September 6, 2019)][House]From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]By Mr. CARSON of Indiana:H.R. 4228.Congress has the power to enact this legislation pursuantto the following:Clause 18 of section 8 of Article I of the Constitution.[Page H7535]]]> hsif00 Energy and Commerce Committee House Standing hsif14 Health Subcommittee Referred to 2019-09-09T16:08:01Z Referred to 2019-09-06T15:01:00Z 2019-09-09 hsif14 Health Subcommittee 1 House committee actions Referred to the Subcommittee on Health. Committee 2019-09-09 Sponsor introductory remarks on measure. (CR E1107) IntroReferral B00100 9 Library of Congress 2019-09-06 Referred to the House Committee on Energy and Commerce. IntroReferral H11100 2 House floor actions hsif00 Energy and Commerce Committee 2019-09-06 Introduced in House IntroReferral Intro-H 9 Library of Congress 2019-09-06 Introduced in House IntroReferral 1000 9 Library of Congress C001072 Rep. Carson, Andre [D-IN-7] Andre Carson D IN 7 N H001067 Rep. Hudson, Richard [R-NC-8] Richard Hudson R NC 8 2019-09-06 True B001285 Rep. Brownley, Julia [D-CA-26] Julia Brownley D CA 26 2019-09-06 True B001275 Rep. Bucshon, Larry [R-IN-8] Larry Bucshon R IN 8 2019-09-06 True D000191 Rep. DeFazio, Peter A. [D-OR-4] PETER DEFAZIO D OR A. 4 2019-09-06 True D000610 Rep. Deutch, Theodore E. [D-FL-22] Theodore Deutch D FL E. 22 2019-09-06 True F000466 Rep. Fitzpatrick, Brian K. [R-PA-1] Brian Fitzpatrick R PA K. 1 2019-09-06 True J000032 Rep. Jackson Lee, Sheila [D-TX-18] SHEILA JACKSON LEE D TX 18 2019-09-06 True L000570 Rep. Lujan, Ben Ray [D-NM-3] Ben Lujan D NM R. 3 2019-09-06 True M000087 Rep. Maloney, Carolyn B. [D-NY-12] CAROLYN MALONEY D NY B. 12 2019-09-06 True M001160 Rep. Moore, Gwen [D-WI-4] Gwen Moore D WI 4 2019-09-06 True M001202 Rep. Murphy, Stephanie N. [D-FL-7] Stephanie Murphy D FL N. 7 2019-09-06 True N000147 Del. Norton, Eleanor Holmes [D-DC-At Large] ELEANOR NORTON D DC HOLMES 0 2019-09-06 True R000606 Rep. Raskin, Jamie [D-MD-8] Jamie Raskin D MD 8 2019-09-06 True R000616 Rep. Rouda, Harley [D-CA-48] Harley Rouda D CA 48 2019-09-06 True S001201 Rep. Suozzi, Thomas R. [D-NY-3] Thomas Suozzi D NY R. 3 2019-09-06 True W000813 Rep. Walorski, Jackie [R-IN-2] Jackie Walorski R IN 2 2019-09-06 True V000108 Rep. Visclosky, Peter J. [D-IN-1] PETER VISCLOSKY D IN J. 1 2019-09-17 False B001281 Rep. Beatty, Joyce [D-OH-3] Joyce Beatty D OH 3 2019-09-18 False J000126 Rep. Johnson, Eddie Bernice [D-TX-30] EDDIE JOHNSON D TX BERNICE 30 2019-09-18 False B001284 Rep. Brooks, Susan W. [R-IN-5] Susan Brooks R IN W. 5 2019-09-26 False P000607 Rep. Pocan, Mark [D-WI-2] Mark Pocan D WI 2 2019-10-21 False K000210 Rep. King, Peter T. [R-NY-2] PETER KING R NY T. 2 2019-10-21 False B001303 Rep. Blunt Rochester, Lisa [D-DE-At Large] Lisa Blunt Rochester D DE 0 2019-10-21 False A000378 Rep. Axne, Cynthia [D-IA-3] Cynthia Axne D IA 3 2019-10-22 False M001185 Rep. Maloney, Sean Patrick [D-NY-18] Sean Maloney D NY Patrick 18 2019-10-23 False C001110 Rep. Correa, J. Luis [D-CA-46] J. Correa D CA Luis 46 2019-10-23 False H001090 Rep. Harder, Josh [D-CA-10] Josh Harder D CA 10 2019-10-29 False W000800 Rep. Welch, Peter [D-VT-At Large] Peter Welch D VT 0 2019-10-29 False R000609 Rep. Rutherford, John H. [R-FL-4] John Rutherford R FL H. 4 2019-10-30 False S001200 Rep. Soto, Darren [D-FL-9] Darren Soto D FL 9 2019-10-30 False K000389 Rep. Khanna, Ro [D-CA-17] Ro Khanna D CA 17 2019-11-08 False P000604 Rep. Payne, Donald M., Jr. [D-NJ-10] Donald Payne D NJ M. 10 2019-11-08 False R000576 Rep. Ruppersberger, C. A. Dutch [D-MD-2] C. A. Ruppersberger D MD Dutch 2 2019-11-08 False R000515 Rep. Rush, Bobby L. [D-IL-1] BOBBY RUSH D IL L. 1 2019-11-08 False J000295 Rep. Joyce, David P. [R-OH-14] David Joyce R OH P. 14 2019-11-14 False K000379 Rep. Kennedy, Joseph P., III [D-MA-4] Joseph Kennedy D MA P. 4 2019-11-14 False D000399 Rep. Doggett, Lloyd [D-TX-35] LLOYD DOGGETT D TX 35 2019-11-15 False H000324 Rep. Hastings, Alcee L. [D-FL-20] ALCEE HASTINGS D FL L. 20 2019-11-19 False S001145 Rep. Schakowsky, Janice D. [D-IL-9] JANICE SCHAKOWSKY D IL D. 9 2019-11-19 False M001137 Rep. Meeks, Gregory W. [D-NY-5] GREGORY MEEKS D NY W. 5 2019-12-05 False K000382 Rep. Kuster, Ann M. [D-NH-2] Ann Kuster D NH M. 2 2019-12-05 False M001208 Rep. McBath, Lucy [D-GA-6] Lucy McBath D GA 6 2019-12-09 False G000551 Rep. Grijalva, Raúl M. [D-AZ-3] Raúl Grijalva D AZ M. 3 2019-12-11 False K000385 Rep. Kelly, Robin L. [D-IL-2] Robin Kelly D IL L. 2 2019-12-11 False L000586 Rep. Lawson, Al, Jr. [D-FL-5] Al Lawson D FL 5 2019-12-11 False M001163 Rep. Matsui, Doris O. [D-CA-6] Doris Matsui D CA O. 6 2019-12-11 False L000287 Rep. Lewis, John [D-GA-5] JOHN LEWIS D GA 5 2020-01-08 False M000312 Rep. McGovern, James P. [D-MA-2] JAMES MCGOVERN D MA P. 2 2020-01-08 False F000467 Rep. Finkenauer, Abby [D-IA-1] Abby Finkenauer D IA 1 2020-01-09 False L000551 Rep. Lee, Barbara [D-CA-13] BARBARA LEE D CA 13 2020-01-09 False B001251 Rep. Butterfield, G. K. [D-NC-1] G. K. Butterfield D NC 1 2020-01-16 False C001119 Rep. Craig, Angie [D-MN-2] Angie Craig D MN 2 2020-01-16 False E000179 Rep. Engel, Eliot L. [D-NY-16] ELIOT ENGEL D NY L. 16 2020-01-16 False M001203 Rep. Malinowski, Tom [D-NJ-7] Tom Malinowski D NJ 7 2020-01-17 False T000193 Rep. Thompson, Bennie G. [D-MS-2] BENNIE THOMPSON D MS 2 2020-01-29 False N000002 Rep. Nadler, Jerrold [D-NY-10] JERROLD NADLER D NY 10 2020-02-04 False C001117 Rep. Casten, Sean [D-IL-6] Sean Casten D IL 6 2020-02-25 False S001165 Rep. Sires, Albio [D-NJ-8] Albio Sires D NJ 8 2020-05-14 False L000562 Rep. Lynch, Stephen F. [D-MA-8] Stephen Lynch D MA F. 8 2020-06-22 False S001207 Rep. Sherrill, Mikie [D-NJ-11] Mikie Sherrill D NJ 11 2020-07-29 False B001270 Rep. Bass, Karen [D-CA-37] Karen Bass D CA 37 2020-09-04 False D000096 Rep. Davis, Danny K. [D-IL-7] DANNY DAVIS D IL K. 7 2020-09-04 False R000486 Rep. Roybal-Allard, Lucille [D-CA-40] LUCILLE ROYBAL-ALLARD D CA 40 2020-09-04 False B001300 Rep. Barragan, Nanette Diaz [D-CA-44] Nanette Barragan D CA Diaz 44 2020-09-11 False C001097 Rep. Cárdenas, Tony [D-CA-29] Tony Cárdenas D CA 29 2020-09-11 False C001067 Rep. Clarke, Yvette D. [D-NY-9] Yvette Clarke D NY D. 9 2020-09-11 False S001185 Rep. Sewell, Terri A. [D-AL-7] Terri Sewell D AL A. 7 2020-09-11 False M001166 Rep. McNerney, Jerry [D-CA-9] Jerry McNerney D CA 9 2020-09-17 False H001083 Rep. Horn, Kendra S. [D-OK-5] Kendra Horn D OK S. 5 2020-09-23 False G000559 Rep. Garamendi, John [D-CA-3] John Garamendi D CA 3 2020-09-29 False C001080 Rep. Chu, Judy [D-CA-27] Judy Chu D CA 27 2020-10-06 False M001198 Rep. Marshall, Roger [R-KS-1] Roger Marshall R KS 1 2020-10-09 False O000171 Rep. O'Halleran, Tom [D-AZ-1] Tom O'Halleran D AZ 1 2020-10-16 False V000131 Rep. Veasey, Marc A. [D-TX-33] Marc Veasey D TX A. 33 2020-10-16 False P000523 Rep. Price, David E. [D-NC-4] DAVID PRICE D NC E. 4 2020-10-20 False P000617 Rep. Pressley, Ayanna [D-MA-7] Ayanna Pressley D MA 7 2020-10-23 False Health Congressional oversight Government information and archives Health information and medical records Health personnel Health programs administration and funding Health promotion and preventive care Medical research Medical tests and diagnostic methods Public-private cooperation Research administration and funding Research and development Health 00 2019-09-06 Introduced in House 2020-07-24T21:47:00Z Rare disease Advancement, surveillance Research, and Education Act of 2019 or the RARE Act of 2019

The bill reauthorizes through FY2024 the National Institutes of Health Rare Disease Regional Centers of Excellence and expands activities to facilitate research and increase awareness of rare diseases and conditions. (Rare diseases and conditions are those with a prevalence of fewer than 200,000 individuals in the United States.)

The Centers for Disease Control and Prevention (CDC) may expand infrastructure and activities to track the epidemiology of up to four rare diseases and conditions and incorporate this information into a National Rare Disease or Condition Surveillance System.

The Agency for Healthcare Research and Quality must expand its activities to increase health care providers' awareness of rare diseases and conditions.

The National Academies of Sciences, Engineering, and Medicine, or another appropriate entity, must update the 2010 report Rare Diseases and Orphan Products: Accelerating Research and Development.

]]> RARE Act of 2019 Display Title RARE Act of 2019 Official Title as Introduced To expand and improve the programs and activities of the Department of Health and Human Services for awareness, education, research, surveillance, diagnosis, and treatment concerning rare diseases and conditions. Introduced in House IH Short Title(s) as Introduced RARE Act of 2019 Introduced in House IH Short Title(s) as Introduced Rare disease Advancement, surveillance Research, and Education Act of 2019 Introduced in House IH Introduced in House 2019-09-06T04:00:00Z https://www.govinfo.gov/content/pkg/BILLS-116hr4228ih/xml/BILLS-116hr4228ih.xml 2019-09-09 Referred to the Subcommittee on Health. text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain. Congressional Research Service, Library of Congress This file contains bill summaries and statuses for federal legislation. A bill summary describes the most significant provisions of a piece of legislation and details the effects the legislative text may have on current law and federal programs. Bill summaries are authored by the Congressional Research Service (CRS) of the Library of Congress. As stated in Public Law 91-510 (2 USC 166 (d)(6)), one of the duties of CRS is "to prepare summaries and digests of bills and resolutions of a public general nature introduced in the Senate or House of Representatives". For more information, refer to the User Guide that accompanies this file.