SRES-104-119
Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S1434; text: CR S1433)
Sponsored by John Barrasso (R-WY)
What it does
This resolution designates February 27, 2025, as "Rare Disease Day." It does not create any new programs, change any laws, or appropriate any funds. It expresses the Senate's recognition of the importance of awareness, early diagnosis, and research efforts for rare diseases and disorders.
Who benefits
The more than 30 million Americans living with one of the 10,000+ known rare diseases may benefit from increased public awareness. Patient advocacy organizations, rare disease researchers, and pharmaceutical companies developing orphan drugs may gain visibility. Children with rare diseases, who represent a significant share of those affected, are specifically noted in the resolution.
Who is hurt
No group is directly harmed by this resolution. As a purely commemorative measure, it imposes no costs, mandates, or restrictions on any individual, organization, or government entity.
Supporters argue
Supporters argue that rare diseases affect over 30 million Americans yet approximately 95% still lack an FDA-approved treatment, making public awareness campaigns a meaningful tool for driving research funding and policy attention. They contend that designating an official day aligns the U.S. Senate with a global observance first held in 2009, reinforcing bipartisan commitment to the rare disease community and the legacy of the 1983 Orphan Drug Act.
Opponents argue
Opponents could argue that symbolic resolutions consume limited legislative time and floor resources without producing any enforceable policy change, funding, or structural improvement for rare disease patients. They might contend that the 95% of rare diseases still lacking an approved treatment reflects a gap that requires substantive legislative action — such as increased NIH appropriations or expanded FDA programs — rather than commemorative designations.