Bill > SRes104

This resolution designates February 27, 2025, as "Rare Disease Day" while highlighting the significant challenges faced by individuals with rare diseases. The resolution provides context about rare diseases, noting that in the United States, a rare disease affects fewer than 200,000 individuals, and currently over 30 million Americans are living with at least one of more than 10,000 known rare diseases. The resolution acknowledges that while the FDA has approved over 882 drugs with 1,300 orphan indications (treatments for rare conditions), approximately 95 percent of rare diseases still lack an approved treatment. It emphasizes the difficulties patients face, including challenges in obtaining accurate diagnoses, finding specialized physicians, and financing life-altering treatments. The resolution aims to raise awareness about rare diseases, encourage early and accurate diagnosis, and support national and global research efforts to develop effective treatments, diagnostics, and potential cures. By marking this day, the resolution seeks to draw attention to the unique medical and personal challenges faced by individuals and families dealing with rare diseases, while recognizing ongoing scientific and medical advancements in this field.

https://www.congress.gov/bill/119th-congress/senate-resolution/104/all-info