Feb. 28 is National Rare Disease Day, which aims to “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.” A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time. (Learn more.) There are several bills in Congress addressing rare disease research and awareness.
Bills Related to Rare Diseases
We’re spotlighting bills related to rare diseases. Weigh in and POPVOX will deliver your message to Congress, guaranteed.
- HRes 493
Rare Disease Day
(Also SRes 368) Expressing support for designation of February 28, 2013, as Rare Disease Day.
- HR 225
National Pediatric Research Network Act
(Also S 424) A bill to amend title IV of the Public Health Service Act to provide for a National Pediatric Research Network, including with respect to pediatric rare diseases or conditions.
- HCRes 31
Supporting Rare Pituitary Disease Awareness
Expresses support for rare pituitary disease awareness, and a substantial national commitment to improving diagnostics and cures for rare pituitary diseases and quality of life for afflicted patients.
- HR 1591
CAL Undiagnosed Diseases Research and Collaboration Network Act
To amend the Public Health Service Act to provide for the establishment and maintenance of an undiagnosed diseases network.
- S 1128
Preserving Access to Orphan Drugs Act
(Also HR 2315) To clarify the orphan drug exception to the annual fee on branded prescription pharmaceutical manufacturers and importers.
- HR 3116
MODDERN Cures Act
To promote the development of meaningful treatments for patients.
Please keep in mind that highlighting a bill doesn’t imply a POPVOX endorsement in any way. Rather, we’re simply trying to offer one more way to stay informed of an overwhelmingly complex legislative system.
