III 

112TH CONGRESS 

1ST SESSION S. RES. 74 

Designates February 28, 2011, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 17, 2011 

Mr. BROWN of Ohio (for himself and Mr. BARRASSO) submitted the following 

resolution; which was considered and agreed to 

RESOLUTION 

Designates February 28, 2011, as ‘‘Rare Disease Day’’. 

Whereas rare diseases and disorders are those which affect 

small patient populations, typically populations smaller 

than 200,000 individuals in the United States; 

Whereas as of the date of approval of this resolution, nearly 

7,000 rare diseases affect 30,000,000 Americans and 

their families; 

Whereas children with rare genetic diseases account for more 

than half of the population affected by rare diseases in 

the United States; 

Whereas many rare diseases are serious, life-threatening, and 

lack an effective treatment; 

Whereas rare diseases and conditions include epidermolysis 

bullosa, progeria, sickle cell anemia, Tay-Sachs, cystic fiVerDate Mar 15 2010 03:15 Feb 18, 2011 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\SR74.ATS SR74

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•SRES 74 ATS 

brosis, many childhood cancers, and fibrodysplasia 

ossificans progressiva; 

Whereas people with rare diseases experience challenges that 

include difficulty in obtaining an accurate diagnosis, limited treatment options, and difficulty finding physicians 

or treatment centers with expertise in their disease; 

Whereas great strides have been made in research and treatment for rare diseases as a result of the Orphan Drug 

Act (Public Law 97–414; 96 Stat. 2049) and amendments made by that Act; 

Whereas both the Food and Drug Administration and the 

National Institutes of Health have established special offices to advocate for rare disease research and treatments; 

Whereas the National Organization for Rare Disorders, an 

organization established in 1983 to provide services to, 

and advocate on behalf of, patients with rare diseases, 

was a primary force behind the enactment of the Orphan 

Drug Act and remains a critical public voice for people 

with rare diseases; 

Whereas the National Organization for Rare Disorders sponsors Rare Disease Day in the United States to increase 

public awareness of rare diseases; 

Whereas Rare Disease Day has become a global event occurring annually on the last day of February; 

Whereas Rare Disease Day was observed in the United 

States for the first time on February 28, 2009; and 

Whereas Rare Disease Day is anticipated to be observed globally in years to come, providing hope and information for 

rare disease patients around the world; Now, therefore, 

be it 


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•SRES 74 ATS 

1 Resolved, That the Senate— 

2 (1) designates February 28, 2011, as ‘‘Rare 

3 Disease Day’’; 

4 (2) recognizes the importance of improving 

5 awareness and encouraging accurate and early diag6 nosis of rare diseases and disorders; and 

7 (3) supports a national and global commitment 

8 to improving access to, and developing new treat9 ments, diagnostics, and cures for, rare diseases and 

10 disorders. 

Æ 


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