RARE Act of 2019
Bill journey · stage 2 of 5
Under committee review
What it doesSummary 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.
What just happenedSep 9, 2019
Referred to the Subcommittee on Health.
Who’s behind it
- Introduced in HouseSep 6, 2019
- Sep 9, 2019Committee
Referred to the Subcommittee on Health.
Health Subcommittee - Sep 9, 2019IntroReferralB00100
Sponsor introductory remarks on measure. (CR E1107)
- Sep 6, 2019IntroReferralH11100
Referred to the House Committee on Energy and Commerce.
Energy and Commerce Committee - Sep 6, 2019IntroReferralIntro-H
Introduced in House
- Sep 6, 2019IntroReferral1000
Introduced in House