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Version 00 · Introduced in House · Dec 22, 2022
Rare disease Advancement, surveillance Research, and Education Act of 2022 or the RARE Act of 2022
The bill reauthorizes through FY2028 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 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.
People & committees
Rep. Carson, André [D-IN-7] · D–IN
Legislative record
A procedural vote is different from passage. Passage in one chamber does not establish enactment. Explore the glossary.
Referred to the House Committee on Energy and Commerce.
Sponsor introductory remarks on measure. (CR E1335-1336)
Introduced in House
Introduced in House
Primary sources
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Source last updated: Jan 3, 2025. Consult Congress.gov for the current record.
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