Bill > HRes493

This Resolution expresses support for the designation of February 28, 2014, as "Rare Disease Day," acknowledging that rare diseases affect small patient populations, with nearly 7,000 such conditions impacting approximately 30 million people in the United States, many of whom are children, and that these diseases are often serious, life-threatening, and lack effective treatments. The Resolution highlights the challenges faced by individuals with rare diseases, including difficulties in diagnosis and treatment access, while also recognizing significant progress made in research and treatment development, such as the Orphan Drug Act and initiatives by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) to advocate for rare diseases. It further emphasizes the role of organizations like the National Organization for Rare Disorders (NORD) in raising public awareness and supporting patients, and supports a national and global commitment to improving access to and developing new treatments, diagnostics, and cures for these conditions.