III 

113TH CONGRESS 

1ST SESSION S. RES. 57 

Designating February 28, 2013, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 26, 2013 

Mr. BROWN (for himself, Mr. BARRASSO, Mr. WHITEHOUSE, Mr. PRYOR, and 

Mrs. HAGAN) submitted the following resolution; which was considered 

and agreed to 

RESOLUTION 

Designating February 28, 2013, as ‘‘Rare Disease Day’’. 

Whereas rare diseases and disorders are those that affect a 

small number of patients, typically less than 200,000 

people in the United States; 

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

7,000 rare diseases affect approximately 30,000,000 people in the United States 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 00:45 Feb 27, 2013 Jkt 029200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\SR57.ATS SR57

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•SRES 57 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 diseases; 

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 2013 marks the 30th anniversary of the Orphan 

Drug Act and therefore a time to reflect upon the successes of that Act and the challenges to be addressed in 

the future; 

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 and was observed in more than 60 countries in 2012; 


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•SRES 57 ATS 

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 for years to come, providing hope and information 

for rare disease patients around the world; Now, therefore, be it 

1 Resolved, That the Senate— 

2 (1) designates February 28, 2013, 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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