S.Res. 620

97 SRES 620 ATS: Designating February 28, 2026, as “Rare Disease Day”.
 U.S. Senate
 2026-02-26
 text/xml
 EN
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 III  119th CONGRESS  2d Session  S. RES. 620  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
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.