[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 636 Agreed to Senate (ATS)]

<DOC>






118th CONGRESS
  2d Session
S. RES. 636

        Designating February 29, 2024, as ``Rare Disease Day''.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             April 10, 2024

 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

_______________________________________________________________________

                               RESOLUTION


 
        Designating February 29, 2024, as ``Rare Disease Day''.

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.
                                 <all>