    [Congressional Record Volume 171, Number 39 (Thursday, February 27, 2025)]
    [Senate]
    [Page S1433]
    From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

    SENATE RESOLUTION 104--DESIGNATING FEBRUARY 27, 2025, AS ``RARE DISEASE
                                     DAY''

      Mr. BARRASSO (for himself, Mr. Blumenthal, Ms. Klobuchar, Mr.
    Marshall, Mr. Scott of South Carolina, Mr. Wicker, and Mr. Booker)
    submitted the following resolution; which was considered and agreed to:

                                  S. Res. 104

           Whereas a rare disease or disorder is a disease or disorder
         that affects a small number of patients;
           Whereas, in the United States, a rare disease or disorder
         is defined as affecting fewer than 200,000 individuals;
           Whereas, as of the date of adoption of this resolution,
         more than 30,000,000 individuals in the United States are
         living with at least 1 of the more than 10,000 known rare
         diseases or disorders;
           Whereas children with rare diseases or disorders account
         for a significant portion of the population affected by rare
         diseases or disorders in the United States;
           Whereas many rare diseases and disorders are serious and
         life-threatening;
           Whereas 2025 marks the 42nd anniversary of the enactment of
         the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049), a
         landmark law enabling tremendous advances in the research and
         treatment of rare diseases and disorders;
           Whereas programs such as the Accelerating Rare disease
         Cures Program of the Food and Drug Administration (referred
         to in this preamble as the ``FDA'') aim to drive scientific
         and regulatory innovation and engagement to accelerate the
         availability of treatments for patients with rare diseases;
           Whereas 26 of the 50 novel drugs approved by the Center for
         Drug Evaluation and Research of the FDA in 2024--
           (1) were approved to prevent, diagnose, or treat a rare
         disease or condition; and
           (2) received an orphan-drug designation;
           Whereas, although the FDA has approved more than 882 drugs
         and biological products with 1,300 orphan indications as of
         the date of adoption of this resolution, approximately 95
         percent of rare diseases still do not have a treatment
         approved by the FDA for their condition;
           Whereas financing life-altering and lifesaving treatments
         can be challenging for individuals with a rare disease or
         disorder and their families;
           Whereas individuals with rare diseases or disorders can
         experience difficulty in obtaining accurate diagnoses and
         finding physicians or treatment centers with expertise in
         their rare disease or disorder;
           Whereas the National Institutes of Health support
         innovative research on the treatment of rare diseases and
         disorders;
           Whereas Rare Disease Day is observed each year on the last
         day of February; and
           Whereas Rare Disease Day is a global event that was first
         observed in the United States on February 28, 2009: Now,
         therefore, be it
           Resolved, That the Senate--
           (1) designates February 27, 2025, as ``Rare Disease Day'';
         and
           (2) recognizes the importance of, with respect to rare
         diseases and disorders--
           (A) improving awareness;
           (B) encouraging accurate and early diagnosis; and
           (C) supporting national and global research efforts to
         develop effective treatments, diagnostics, and cures.

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