RARE Act of 2019

Summary

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.

This text is taken from the official record. PoliticalRepo does not editorialize.

Timeline

No timeline events have been ingested for this record yet.

Votes

No vote records are attached yet.

Versions

No version snapshots stored. Document URLs remain at the source.

Documents

3 official files

• Introduced in House (text)

  Introduced in House · EN · 6 September 2019

  ViewDownloadOpen at official source

• Introduced in House (PDF)

  Introduced in House · EN · 6 September 2019

  ViewDownloadOpen at official source

• Introduced in House

  summary · EN · 6 September 2019

  Open at official source

Sponsors

No sponsors or actors listed by the source.

Related records

No cross-record relationships stored yet.