A resolution designating February 28, 2026, as "Rare Disease Day".

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 620 Agreed to Senate (ATS)]

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119th CONGRESS
  2d Session
S. RES. 620

        Designating February 28, 2026, as ``Rare Disease Day''.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                           February 26, 2026

 Mr. Barrasso (for himself and Mr. Blumenthal) submitted the following 
             resolution; which was considered and agreed to

_______________________________________________________________________

                               RESOLUTION

 
        Designating February 28, 2026, 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 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 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, although there have been great advancements in finding treatments for 
        rare diseases, approximately 95 percent of rare diseases still do not 
        have a treatment approved by the FDA;
Whereas 2026 marks the 43rd 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 the National Institutes of Health support innovative research on the 
        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 23 of the 46 novel drugs approved by the Center for Drug Evaluation and 
        Research of the FDA in 2025--

    (1) were approved to prevent, diagnose, or treat a rare disease or 
condition; and

    (2) received an orphan-drug designation;

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 28, 2026, 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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