| 1 | 1 | | III |
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| 2 | 2 | | 119THCONGRESS |
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| 3 | 3 | | 1 |
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| 4 | 4 | | STSESSION S. RES. 104 |
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| 5 | 5 | | Designating February 27, 2025, as ‘‘Rare Disease Day’’. |
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| 6 | 6 | | IN THE SENATE OF THE UNITED STATES |
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| 7 | 7 | | FEBRUARY27, 2025 |
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| 8 | 8 | | Mr. B |
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| 9 | 9 | | ARRASSO(for himself, Mr. BLUMENTHAL, Ms. KLOBUCHAR, Mr. MAR- |
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| 10 | 10 | | SHALL, Mr. SCOTTof South Carolina, Mr. WICKER, and Mr. BOOKER) |
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| 11 | 11 | | submitted the following resolution; which was considered and agreed to |
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| 12 | 12 | | RESOLUTION |
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| 13 | 13 | | Designating February 27, 2025, as ‘‘Rare Disease Day’’. |
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| 14 | 14 | | Whereas a rare disease or disorder is a disease or disorder |
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| 15 | 15 | | that affects a small number of patients; |
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| 16 | 16 | | Whereas, in the United States, a rare disease or disorder is |
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| 17 | 17 | | defined as affecting fewer than 200,000 individuals; |
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| 18 | 18 | | Whereas, as of the date of adoption of this resolution, more |
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| 19 | 19 | | than 30,000,000 individuals in the United States are liv- |
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| 20 | 20 | | ing with at least 1 of the more than 10,000 known rare |
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| 21 | 21 | | diseases or disorders; |
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| 22 | 22 | | Whereas children with rare diseases or disorders account for |
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| 23 | 23 | | a significant portion of the population affected by rare |
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| 24 | 24 | | diseases or disorders in the United States; |
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| 25 | 25 | | Whereas many rare diseases and disorders are serious and |
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| 26 | 26 | | life-threatening; |
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| 29 | 29 | | •SRES 104 ATS |
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| 30 | 30 | | Whereas 2025 marks the 42nd anniversary of the enactment |
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| 31 | 31 | | of the Orphan Drug Act (Public Law 97–414; 96 Stat. |
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| 32 | 32 | | 2049), a landmark law enabling tremendous advances in |
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| 33 | 33 | | the research and treatment of rare diseases and dis- |
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| 34 | 34 | | orders; |
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| 35 | 35 | | Whereas programs such as the Accelerating Rare disease |
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| 36 | 36 | | Cures Program of the Food and Drug Administration |
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| 37 | 37 | | (referred to in this preamble as the ‘‘FDA’’) aim to drive |
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| 38 | 38 | | scientific and regulatory innovation and engagement to |
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| 39 | 39 | | accelerate the availability of treatments for patients with |
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| 40 | 40 | | rare diseases; |
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| 41 | 41 | | Whereas 26 of the 50 novel drugs approved by the Center for |
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| 42 | 42 | | Drug Evaluation and Research of the FDA in 2024— |
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| 43 | 43 | | (1) were approved to prevent, diagnose, or treat a |
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| 44 | 44 | | rare disease or condition; and |
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| 45 | 45 | | (2) received an orphan-drug designation; |
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| 46 | 46 | | Whereas, although the FDA has approved more than 882 |
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| 47 | 47 | | drugs and biological products with 1,300 orphan indica- |
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| 48 | 48 | | tions as of the date of adoption of this resolution, ap- |
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| 49 | 49 | | proximately 95 percent of rare diseases still do not have |
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| 50 | 50 | | a treatment approved by the FDA for their condition; |
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| 51 | 51 | | Whereas financing life-altering and lifesaving treatments can |
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| 52 | 52 | | be challenging for individuals with a rare disease or dis- |
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| 53 | 53 | | order and their families; |
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| 54 | 54 | | Whereas individuals with rare diseases or disorders can expe- |
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| 55 | 55 | | rience difficulty in obtaining accurate diagnoses and find- |
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| 56 | 56 | | ing physicians or treatment centers with expertise in |
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| 57 | 57 | | their rare disease or disorder; |
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| 58 | 58 | | Whereas the National Institutes of Health support innovative |
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| 59 | 59 | | research on the treatment of rare diseases and disorders; |
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| 62 | 62 | | •SRES 104 ATS |
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| 63 | 63 | | Whereas Rare Disease Day is observed each year on the last |
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| 64 | 64 | | day of February; and |
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| 65 | 65 | | Whereas Rare Disease Day is a global event that was first |
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| 66 | 66 | | observed in the United States on February 28, 2009: |
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| 67 | 67 | | Now, therefore, be it |
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| 68 | 68 | | Resolved, That the Senate— 1 |
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| 69 | 69 | | (1) designates February 27, 2025, as ‘‘Rare 2 |
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| 70 | 70 | | Disease Day’’; and 3 |
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| 71 | 71 | | (2) recognizes the importance of, with respect 4 |
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| 72 | 72 | | to rare diseases and disorders— 5 |
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| 73 | 73 | | (A) improving awareness; 6 |
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| 74 | 74 | | (B) encouraging accurate and early diag-7 |
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| 75 | 75 | | nosis; and 8 |
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| 76 | 76 | | (C) supporting national and global re-9 |
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| 77 | 77 | | search efforts to develop effective treatments, 10 |
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| 78 | 78 | | diagnostics, and cures. 11 |
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| 79 | 79 | | Æ |
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