HR 4228
RARE Act of 2019
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- Passed House
- Passed Senate
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- Became Law
Bill overview
The Rare Disease Advancement, Surveillance, Research, and Education Act of 2019 (RARE Act) aims to improve the understanding and treatment of rare diseases in the United States. It reauthorizes funding for existing National Institutes of Health (NIH) Regional Centers of Excellence, expands the Centers for Disease Control and Prevention’s (CDC) surveillance efforts to track up to four specific rare diseases, and directs the Agency for Healthcare Research and Quality to increase awareness among healthcare providers. Additionally, the bill mandates an update to a 2010 report on rare diseases and orphan products by the National Academies of Sciences, Engineering, and Medicine.
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Primary sponsor
Cosponsors
Abby Finkenauer
Al, Jr. Lawson
Albio Sires
Alcee L. Hastings
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