S.Res. 104: A resolution designating February 27, 2025, as "Rare Disease Day".
Sponsor
John Barrasso
Republican · WY
Bill Progress
Latest Action · Feb 27, 2025
Passed the Senate, received in House
Why it matters
The Senate approved this on Rare Disease Day itself, underscoring growing attention to millions of Americans who still lack diagnoses, specialists, or approved treatments.
In practical terms, this is mostly an awareness measure. It recognizes the importance of better public understanding, earlier and more accurate diagnosis, and stronger national and global research efforts. That may sound symbolic, but these resolutions can help advocacy groups, researchers, and patients build momentum for future legislation, funding, and regulatory action.
What does S.Res. 104 do?
Names February 27 as Rare Disease Day
Officially designates February 27, 2025, as "Rare Disease Day" in the Senate.
Highlights the scale of rare disease
States that more than 30 million people in the United States live with at least one of more than 10,000 known rare diseases or disorders.
Calls attention to treatment gaps
Notes that although many orphan drugs have been approved, about 95 percent of rare diseases still do not have an FDA-approved treatment.
Supports earlier and accurate diagnosis
Recognizes the importance of helping patients get diagnosed sooner and more accurately, which is a major problem in rare disease care.
Backs research and innovation
Expresses support for national and global research efforts to develop effective treatments, diagnostic tools, and cures.
Acknowledges existing federal efforts
Points to the Orphan Drug Act, FDA rare disease work, and NIH research as important parts of the response to rare diseases.
Who benefits from S.Res. 104?
People living with rare diseases
They gain visibility for their medical needs and stronger public recognition of the barriers they face in diagnosis, treatment, and care.
Families and caregivers
The resolution validates the financial and emotional strain families often face and helps spotlight the need for better support systems.
Rare disease advocacy organizations
These groups can use the Senate’s statement of support to push for future policy changes, research funding, and public education.
Researchers and drug developers
The measure reinforces political support for rare disease research and for efforts to develop new tests, drugs, and cures.
Who is affected by S.Res. 104?
Children with rare diseases
The resolution specifically notes that children make up a significant share of rare disease patients, highlighting their need for faster diagnosis and treatment.
Doctors and specialty treatment centers
It draws attention to the shortage of expertise and the difficulty patients face in finding providers familiar with rare conditions.
Federal health agencies
The FDA and NIH are recognized as key players in rare disease research and treatment development, adding pressure to continue that work.
Patients facing high treatment costs
The resolution acknowledges that paying for life-altering or lifesaving treatments can be a major challenge for patients and families.
SRES104 Legislative Journey
Floor Action
Feb 27, 2025
Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S1434; text: CR S1433)
About the Sponsor
John Barrasso
Republican, WY · 19 years in Congress
Committees: Energy and Natural Resources, Foreign Relations, Finance
View full profile →
Cosponsors (6)
This bill has 6 cosponsors: 3 Democrats, 3 Republicans, reflecting bipartisan support. Cosponsors represent 6 states: Connecticut, Kansas, Minnesota, and 3 more.
S.Res. 104 Quick Facts
- Chamber
- Senate
- Policy
- Health
- Introduced
- Feb 27, 2025
Passed the Senate, received in House
Feb 27, 2025
S.Res. 104 Bill Text
“Designating February 27, 2025, as “Rare Disease Day”.”
Source: U.S. Government Publishing Office
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