III 

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; 


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•SRES 636 ATS 

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; 


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•SRES 636 ATS 

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 

1 Resolved, That the Senate— 

2 (1) designates February 29, 2024, as ‘‘Rare 

3 Disease Day’’; and 

4 (2) recognizes the importance of, with respect 

5 to rare diseases and disorders— 

6 (A) improving awareness; 

7 (B) encouraging accurate and early diag8 nosis; and 

9 (C) supporting national and global re10 search efforts to develop effective treatments, 

11 diagnostics, and cures. 

Æ 


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