III
119THCONGRESS
1
STSESSION S. RES. 104
Designating February 27, 2025, as ‘‘Rare Disease Day’’.
IN THE SENATE OF THE UNITED STATES
FEBRUARY27, 2025
Mr. B
ARRASSO(for himself, Mr. BLUMENTHAL, Ms. KLOBUCHAR, Mr. MAR-
SHALL, Mr. SCOTTof 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 liv-
ing 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;
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•SRES 104 ATS
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 dis-
orders;
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 indica-
tions as of the date of adoption of this resolution, ap-
proximately 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 dis-
order and their families;
Whereas individuals with rare diseases or disorders can expe-
rience difficulty in obtaining accurate diagnoses and find-
ing 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;
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•SRES 104 ATS
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
(1) designates February 27, 2025, as ‘‘Rare 2
Disease Day’’; and 3
(2) recognizes the importance of, with respect 4
to rare diseases and disorders— 5
(A) improving awareness; 6
(B) encouraging accurate and early diag-7
nosis; and 8
(C) supporting national and global re-9
search efforts to develop effective treatments, 10
diagnostics, and cures. 11
Æ
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