[Congressional Record Volume 170, Number 61 (Wednesday, April 10, 2024)]
[Senate]
[Page S2712]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 636--DESIGNATING FEBRUARY 29, 2024, AS ``RARE DISEASE 
                                 DAY''

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

                              S. Res. 636

       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 
     affects 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 7,000 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 2024 marks the 41st 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 28 of the 55 novel drugs approved by the Center for 
     Drug Evaluation and Research of the FDA in 2023--
       (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 1,100 
     drugs and biological products for an orphan indication for 
     the treatment of a rare disease or disorder, approximately 90 
     percent of rare diseases 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, and was 
     observed in more than 106 countries in 2023: Now, therefore, 
     be it
       Resolved, That the Senate--
       (1) designates February 29, 2024, 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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