IV 
113TH CONGRESS 
2D SESSION 
H. RES. 493 
Expressing support for the designation of February 28, 2014, as ‘‘Rare 
Disease Day’’. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 27, 2014 
Mr. CARSON of Indiana (for himself, Mr. CROWLEY, Mr. LANCE, Mrs. 
CHRISTENSEN, Mr. PASCRELL, and Mr. MCCAUL) submitted the fol-
lowing resolution; which was referred to the Committee on Energy and 
Commerce 
RESOLUTION 
Expressing support for the designation of February 28, 
2014, 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 nearly 7,000 rare diseases affect nearly 30,000,000 
people in the United States and their families; 
Whereas over half of all rare diseases affect children; 
Whereas many rare diseases are serious, life-threatening, and 
lack an effective treatment; 
Whereas one-third of treatments approved by the Food and 
Drug Administration in 2013 were orphan products in-
tended to treat rare diseases; 
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•HRES 493 IH 
Whereas rare diseases and conditions cross the medical spec-
trum and include a broad range of diseases such as 
epidermolysis bullosa, progeria, sickle cell anemia, Tay- 
Sachs, cystic fibrosis, most childhood cancers, and 
fibrodysplasia ossificans progressiva; 
Whereas people with rare diseases experience challenges that 
include difficulty in obtaining an accurate diagnosis, lim-
ited treatment options, and difficulty finding physicians 
or treatment centers with expertise in their disease; 
Whereas the rare disease community made great strides in 
2013, including passing the National Pediatric Research 
Network Act which sets up a network housed within the 
NIH that facilitates greater collaboration amongst re-
search into pediatric diseases; 
Whereas challenges to reimbursement for life-altering and 
often life-saving treatments still exist, such as in reim-
bursement for medical foods that treat rare metabolic 
disorders; 
Whereas great strides have been made in research and treat-
ment for rare diseases as a result of the Orphan Drug 
Act and amendments made by that Act; 
Whereas the Food and Drug Administration has taken great 
strides in involving the patient in the drug review process 
as part of its Patient-Focused Drug Development pro-
gram, an initiative that originated in the Food and Drug 
Administration Safety and Innovation Act; 
Whereas both the Food and Drug Administration and the 
National Institutes of Health have established special of-
fices to advocate for rare disease research and treat-
ments; 
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•HRES 493 IH 
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 2013 marked the 30th anniversary of the Orphan 
Drug Act and the National Organization for Rare Dis-
orders; 
Whereas the National Organization for Rare Disorders spon-
sors ‘‘Rare Disease Day’’ in the United States to increase 
public awareness of rare diseases; 
Whereas ‘‘Rare Disease Day’’ is a global event occurring an-
nually 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 continue to be 
observed globally in years to come, providing hope and in-
formation for rare disease patients around the world: 
Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) supports the designation of ‘‘Rare Disease 
Day’’; 
(2) recognizes the importance of improving 
awareness and encouraging accurate and early diag-
nosis of rare diseases and disorders; and 
(3) supports a national and global commitment 
to improving access to, and developing new treat-
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•HRES 493 IH 
ments, diagnostics, and cures for, rare diseases and 
disorders. 
Æ 
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