Bill > SRes368

This Resolution officially designates February 28, 2014, as "Rare Disease Day" to raise awareness and encourage accurate, early diagnoses for rare diseases, which are defined as conditions affecting fewer than 200,000 individuals in the United States annually. The resolution acknowledges that nearly 7,000 rare diseases impact approximately 30 million Americans, many of whom are children, and that these conditions are often serious, life-threatening, and lack effective treatments. It highlights progress made through legislation like the Orphan Drug Act and initiatives like the Food and Drug Administration's (FDA) Patient-Focused Drug Development program, noting that a significant portion of FDA-approved treatments in 2013 were for rare diseases. Despite these advancements, the resolution recognizes ongoing challenges such as limited access to treatments, reimbursement difficulties, and the struggle for accurate diagnoses and expert medical care. It also commends efforts by government agencies like the FDA and the National Institutes of Health (NIH), as well as advocacy groups like the National Organization for Rare Disorders (NORD), in supporting research and patient needs, and supports a global commitment to developing better treatments, diagnostics, and cures for these conditions.