RARE Act of 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.
Referred to the Subcommittee on Health.