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H.R. 4228 · 116th Congress

RARE Act of 2019

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IntroducedPassed one chamberPassed both chambersBecame law (gold)Resolution agreed to (full, dark)Failed or vetoed (gray)

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Never voted on. It didn't reach a floor vote before the 116th Congress ended, so it expired. A bill has to be introduced again to be considered in a new Congress.

ACD CarsonSponsor
76 cosponsors · 67 D, 9 R
LBR Bucshon JBD Brownley PDD DeFazio TDD Deutch BFR Fitzpatrick RHR Hudson SJD Jackson Lee BLD Luján CMD Maloney GMD Moore SMD Murphy END Norton JRD Raskin HRD Rouda TSD Suozzi JWR Walorski PVD Visclosky JBD Beatty EJD Johnson SBR Brooks LBD Blunt Rochester PKR King MPD Pocan CAD Axne JCD Correa SMD Maloney JHD Harder PWD Welch JRR Rutherford DSD Soto RKD Khanna DPD Payne BRD Rush CRD Ruppersberger DJR Joyce JKD Kennedy LDD Doggett AHD Hastings JSD Schakowsky AKD Kuster GMD Meeks LMD McBath RGD Grijalva RKD Kelly ALD Lawson DMD Matsui JLD Lewis JMD McGovern AFD Finkenauer BLD Lee GKD Butterfield ACD Craig EED Engel TMD Malinowski BTD Thompson JND Nadler SCD Casten ASD Sires SLD Lynch MSD Sherrill KBD Bass DDD Davis LRD Roybal-Allard NBD Barragán YCD Clarke TCD Cárdenas TSD Sewell JMD McNerney KHD Horn JGD Garamendi JCD Chu RMR Marshall TOD O’Halleran MVD Veasey DPD Price APD Pressley

16 signed on when it was introduced; the rest joined later. Cosponsors who withdrew aren't shown.

Rare disease Advancement, surveillance Research, and Education Act of 2019 or the RARE Act of 2019

What it does: CRS summary · Introduced in House · Sep 6, 2019

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.

Written by the nonpartisan Congressional Research Service. All summary versions on Congress.gov

About this bill and sources

Official title: RARE Act of 2019

Also known as: Rare disease Advancement, surveillance Research, and Education Act of 2019

Latest action (Sep 9, 2019): Referred to the Subcommittee on Health.

Policy area: Health · Origin: House · Introduced: Sep 6, 2019

Official page on Congress.gov · Bill text (GovInfo) · Status record (XML)

No recorded floor vote found.