A resolution designating February 27, 2025, as "Rare Disease Day".
This is a Senate resolution designating February 27, 2025 as “Rare Disease Day.” It is a ceremonial, non-binding expression of the Senate’s appreciation for awareness, diagnosis, and research related to rare diseases. The resolution sets the designated date and includes a detailed preamble outlining the impact of rare diseases in the United States, highlighting the prevalence, the challenges patients and families face, and the importance of ongoing research and regulatory efforts to develop treatments, diagnostics, and cures. It notes historical milestones such as the Orphan Drug Act and FDA/NIH programs that support rare-disease innovation, and it emphasizes the need to improve awareness, early diagnosis, and access to expert care. In short, the bill does not create new policies or funding. Instead, it elevates awareness and reinforces the value of continued research and collaboration among national and global stakeholders to better serve people living with rare diseases.
Key Points
- 1Designates February 27, 2025, as “Rare Disease Day.”
- 2Recognizes the substantial impact of rare diseases in the United States, including the number of people affected and the challenges in achieving accurate diagnoses and access to specialized care.
- 3Highlights progress in rare-disease research and therapy development, including the Orphan Drug Act and FDA programs aimed at accelerating treatments.
- 4Notes that despite many approved drugs with orphan designations, the majority of rare diseases still lack FDA-approved treatments and that financing treatments remains difficult for patients and families.
- 5Emphasizes the global nature of Rare Disease Day and encourages awareness, collaboration, and ongoing national and international research efforts to develop effective treatments, diagnostics, and cures.