US HB4228 | 2019-2020 | 116th Congress
Status
Spectrum: Moderate Partisan Bill (Democrat 68-9)
Status: Introduced on September 6 2019 - 25% progression, died in committee
Action: 2019-09-09 - Referred to the Subcommittee on Health.
Pending: House Subcommittee on Health Committee
Text: Latest bill text (Introduced) [PDF]
Status: Introduced on September 6 2019 - 25% progression, died in committee
Action: 2019-09-09 - Referred to the Subcommittee on Health.
Pending: House Subcommittee on Health Committee
Text: Latest bill text (Introduced) [PDF]
Summary
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.
Title
RARE Act of 2019 Rare disease Advancement, surveillance Research, and Education Act of 2019
Sponsors
History
Date | Chamber | Action |
---|---|---|
2019-09-09 | House | Referred to the Subcommittee on Health. |
2019-09-09 | House | Sponsor introductory remarks on measure. (CR E1107) |
2019-09-06 | House | Referred to the House Committee on Energy and Commerce. |
2019-09-06 | House | Introduced in House |
Subjects
Congressional oversight
Government information and archives
Health
Health information and medical records
Health personnel
Health programs administration and funding
Health promotion and preventive care
Medical research
Medical tests and diagnostic methods
Public-private cooperation
Research administration and funding
Research and development
Government information and archives
Health
Health information and medical records
Health personnel
Health programs administration and funding
Health promotion and preventive care
Medical research
Medical tests and diagnostic methods
Public-private cooperation
Research administration and funding
Research and development
US Congress State Sources
Type | Source |
---|---|
Summary | https://www.congress.gov/bill/116th-congress/house-bill/4228/all-info |
Text | https://www.congress.gov/116/bills/hr4228/BILLS-116hr4228ih.pdf |