119-sres104

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 104 Agreed to Senate

    (ATS) ]

<DOC>

119th CONGRESS
 1st Session
S. RES. 104

 Designating February 27, 2025, as ``Rare Disease Day''.

_______________________________________________________________________

 IN THE SENATE OF THE UNITED STATES

 February 27, 2025

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

_______________________________________________________________________

 RESOLUTION

 Designating February 27, 2025, 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 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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