III 

113TH CONGRESS 

2D SESSION S. RES. 368 

Designating February 28, 2014, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 27, 2014 

Mr. BROWN (for himself, Mr. BARRASSO, Mr. WICKER, Mr. COONS, Mr. BENNET, Mr. WHITEHOUSE, Mrs. FEINSTEIN, Mr. PRYOR, and Ms. WARREN) 

submitted the following resolution; which was considered and agreed to 

RESOLUTION 

Designating February 28, 2014, as ‘‘Rare Disease Day’’. 

Whereas a rare disease or disorder is one that affects a small 

number of patients – in the United States, typically less 

than 200,000 individuals annually; 

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; 

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•SRES 368 ATS 

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); 

Whereas the Food and Drug Administration has made great 

strides in involving the patient in the drug review process 

as part of its Patient-Focused Drug Development program, an initiative that originated in the Food and Drug 

Administration Safety and Innovation Act (Public Law 

112-144); 

Whereas a third of all treatments approved by the Food and 

Drug Administration in 2013 were orphan products intended to treat rare diseases; 

Whereas lack of access to effective treatments and difficulty 

in obtaining reimbursement for life-altering, and even 

life-saving, treatments still exist and remain significant 

challenges for the rare disease community and their families; 

Whereas rare diseases and conditions include epidermolysis 

bullosa, progeria, sickle cell anemia, spinal muscular atrophy (SMA), Duchenne muscular dystrophy (DMD), 

Tay-Sachs, cystic fibrosis, pulmonary fibrosis, many 

childhood cancers, and fibrodysplasia ossificans 

progressiva; 

Whereas people with rare diseases experience challenges that 

include difficulty in obtaining accurate diagnoses, limited 

treatment options, and difficulty finding physicians or 

treatment centers with expertise in their diseases; 

Whereas the rare disease community made great strides in 

2013, including the passage of the National Pediatric Research Network Act (Public Law 113-55), which calls 

special attention to rare diseases and directs the National 

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Institutes of Health to facilitate greater collaboration 

among researchers; 

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, remains a critical public voice for people with rare diseases; 

Whereas 2013 marked the 30th anniversary of the Orphan 

Drug Act and the National Organization for Rare Disorders; 

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 is observed each year on the last 

day of February; 

Whereas Rare Disease Day is a global event, first observed 

in the United States on February 28, 2009, and observed 

in 60 countries in 2013; and 

Whereas Rare Disease Day is expected 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, 2014, as ‘‘Rare 

3 Disease Day’’; 

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1 (2) recognizes the importance of improving 

2 awareness and encouraging accurate and early diag3 nosis of rare diseases and disorders; and 

4 (3) supports a national and global commitment 

5 to improving access to, and developing new treat6 ments, diagnostics, and cures for rare diseases and 

7 disorders. 

Æ 

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