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HR 4228 116th Congress House

RARE Act of 2019

Official title: To expand and improve the programs and activities of the Department of Health and Human Services for awareness, education, research, surveillance, diagnosis, a… Show full official titleShow less

Official title: 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: September 6, 2019 Introduced by: Carson, André Democratic · Indiana See on congress.gov
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This bill died when the 116th Congress ended
It never became law before the 116th Congress (2019–2020) adjourned, and bills don't carry over to the next Congress. It would have to be reintroduced. You can still save it for reference, but it won't receive updates.
 Everywhere this bill has been 4 steps
Introduced
In committee
Reported out
Passed House
Passed Senate
To President
Became law
Sep 9, 2019
Referred to the Subcommittee on Health.
Sep 9, 2019
Sponsor introductory remarks on measure. (CR E1107)
Sep 6, 2019
Introduced in House
Sep 6, 2019
Referred to the House Committee on Energy and Commerce.
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 Latest action September 9, 2019

Referred to the Subcommittee on Health.

 Plain-English summary Congressional Research Service

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.

 Bill text 1 version

Source documents hosted by congress.gov.

 Committees of jurisdiction 2
 Cosponsors 73
All 73 Democratic 34 Republican 5
D
Pressley, Ayanna
Massachusetts · Oct 23, 2020
PRICE, DAVID
· Oct 20, 2020
O'Halleran, Tom
· Oct 16, 2020
 D
Veasey, Marc A.
Texas · Oct 16, 2020
 R
Marshall, Roger
Kansas · Oct 9, 2020
 D
Chu, Judy
California · Oct 6, 2020
 D
Garamendi, John
California · Sep 29, 2020
McNerney, Jerry
· Sep 17, 2020
 D
Barragán, Nanette Diaz
California · Sep 11, 2020
Cárdenas, Tony
· Sep 11, 2020
 D
Clarke, Yvette D.
New York · Sep 11, 2020
 D
Sewell, Terri A.
Alabama · Sep 11, 2020
Bass, Karen
· Sep 4, 2020
 D
Davis, Danny K.
Illinois · Sep 4, 2020
ROYBAL-ALLARD, LUCILLE
· Sep 4, 2020
 D
Sherrill, Mikie
New Jersey · Jul 29, 2020
 D
Lynch, Stephen F.
Massachusetts · Jun 22, 2020
Sires, Albio
· May 14, 2020
 D
Casten, Sean
Illinois · Feb 25, 2020
 D
Nadler, Jerrold
New York · Feb 4, 2020
 D
Thompson, Bennie G.
Mississippi · Jan 29, 2020
Malinowski, Tom
· Jan 17, 2020
Butterfield, G. K.
· Jan 16, 2020
 D
Craig, Angie
Minnesota · Jan 16, 2020
ENGEL, ELIOT
· Jan 16, 2020
Lee, Barbara
· Jan 9, 2020
LEWIS, JOHN
· Jan 8, 2020
 D
McGovern, James P.
Massachusetts · Jan 8, 2020
 D
Grijalva, Raúl M.
Arizona · Dec 11, 2019
 D
Kelly, Robin L.
Illinois · Dec 11, 2019
Lawson, Al
· Dec 11, 2019
 D
Matsui, Doris O.
California · Dec 11, 2019
 D
McBath, Lucy
Georgia · Dec 9, 2019
Kuster, Ann
· Dec 5, 2019
 D
Meeks, Gregory W.
New York · Dec 5, 2019
HASTINGS, ALCEE
· Nov 19, 2019
 D
Schakowsky, Janice D.
Illinois · Nov 19, 2019
 D
Doggett, Lloyd
Texas · Nov 15, 2019
 R
Joyce, David P.
Ohio · Nov 14, 2019
Kennedy, Joseph
· Nov 14, 2019
 D
Khanna, Ro
California · Nov 8, 2019
Payne, Donald
· Nov 8, 2019
Ruppersberger, C.
· Nov 8, 2019
RUSH, BOBBY
· Nov 8, 2019
 R
Rutherford, John H.
Florida · Oct 30, 2019
 D
Soto, Darren
Florida · Oct 30, 2019
 D
Harder, Josh
California · Oct 29, 2019
 D
Welch, Peter
Vermont · Oct 29, 2019
 D
Correa, J. Luis
California · Oct 23, 2019
Maloney, Sean
· Oct 23, 2019
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APA
U.S. Congress. (2026). H.R. 4228: RARE Act of 2019. 116th Congress. Open America. https://openamerica.io/bill/116-HR-4228/
MLA
"H.R. 4228: RARE Act of 2019." 116th Congress, 2026, Open America, https://openamerica.io/bill/116-HR-4228/.
Bluebook (legal)
H.R. 4228, 116th Cong. (2026), https://openamerica.io/bill/116-HR-4228/.
Markdown link
[H.R. 4228: RARE Act of 2019](https://openamerica.io/bill/116-HR-4228/)
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