A resolution designating February 27, 2025, as "Rare Disease Day".
- Bill Number
- S.Res. 104
- Origin Chamber
- Senate
- Congress
- 119th Congress, Session 1
- Policy Area
- Health
- Status
- Passed Senate
- Latest Action
- 2025-02-27: Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S1434; text: CR S1433)
- Last Updated
- 2026-04-07T20:27:30Z
AI-Generated Summary
Purpose
This Senate Resolution (S. Res. 104) aims to designate February 27, 2025, as "Rare Disease Day" in the United States. It highlights the challenges faced by individuals with rare diseases—defined as conditions affecting fewer than 200,000 people in the U.S.—and emphasizes the need for greater awareness, better diagnosis, and increased research to develop treatments.
Key Provisions
- Designation of the Day: Officially recognizes February 27, 2025, as "Rare Disease Day," aligning with the global observance held annually on the last day of February (first observed in the U.S. in 2009).
- Recognition of Importance: Acknowledges the role of rare diseases in affecting over 30 million Americans, including a significant number of children, with more than 10,000 known types, most of which are serious or life-threatening.
- Support for Key Areas:
- Improving public awareness of rare diseases.
- Encouraging accurate and early diagnosis to help patients access expert care.
- Supporting national and global research efforts to create effective treatments, diagnostics, and cures.
- Background Context Provided: Notes milestones like the 42nd anniversary of the Orphan Drug Act (a 1983 law that incentivizes drug development for rare diseases), FDA programs accelerating cures, and NIH research support. It also highlights that while the FDA has approved over 882 drugs for rare conditions (with 1,300 specific uses), about 95% of rare diseases lack approved treatments.
Significant Changes to Existing Law
This is a non-binding resolution and does not amend or create new laws. It builds on existing frameworks like the Orphan Drug Act and FDA initiatives but introduces no legal changes or enforceable requirements.
Potential Impacts
- On Citizens: Increases public awareness, which may help families and patients with rare diseases (who often face diagnosis delays, high treatment costs, and limited expert care) feel more supported and informed.
- On Government Agencies: Symbolically endorses the work of agencies like the FDA (e.g., its Accelerating Rare Disease Cures Program and 2024 approvals of 26 orphan drugs) and NIH, potentially encouraging continued funding and innovation without mandating action.
- On International Relations: Reinforces U.S. participation in a global event, fostering collaboration on rare disease research worldwide, though impacts are primarily symbolic.
Main Stakeholders Affected
- Individuals and Families: Over 30 million Americans living with rare diseases, particularly children and those without approved treatments, who may benefit from heightened awareness and research focus.
- Healthcare Providers: Doctors, specialists, and treatment centers dealing with diagnosis and care challenges for rare conditions.
- Researchers and Advocates: Scientists, nonprofits, and groups pushing for cures, supported by references to NIH and FDA efforts.
- Pharmaceutical Industry: Companies developing orphan drugs, incentivized by laws like the Orphan Drug Act.
Notable Legal, Constitutional, or Political Implications
- Legal/Constitutional: As a simple resolution agreed to by the Senate, it has no force of law and does not require House approval or presidential signature. It respects constitutional separation of powers by serving as an expression of Senate sentiment rather than policy.
- Political: Demonstrates bipartisan support (introduced by senators from both parties), signaling congressional priority on public health issues. It could influence future appropriations for rare disease programs but carries no binding obligations.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (6)
Sen. Blumenthal, Richard [D-CT], Sen. Klobuchar, Amy [D-MN], Sen. Marshall, Roger [R-KS], Sen. Scott, Tim [R-SC], Sen. Wicker, Roger F. [R-MS], Sen. Booker, Cory A. [D-NJ]
Recent Actions
- 2025-02-27: Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent. (consideration: CR S1434; text: CR S1433)
- 2025-02-27: Passed/agreed to in Senate: Submitted in the Senate, considered, and agreed to without amendment and with a preamble by Unanimous Consent.
- 2025-02-27: Introduced in Senate
Bill Versions
- Designating February 27, 2025, as Rare Disease Day. — issued 2025-02-27 — PDF (3 pages)