IV 
113TH CONGRESS 
1ST SESSION 
H. RES. 91 
Expressing support for designation of February 28, 2013, as Rare Disease 
Day. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 28, 2013 
Mr. CARSON of Indiana (for himself, Mr. BURGESS, Mr. CARTWRIGHT, Mr. 
CASSIDY, Mrs. CHRISTENSEN, Mr. CONYERS, Mr. CROWLEY, Mr. HOLT, 
Mr. LANCE, Ms. LEE of California, Mr. LEVIN, Ms. NORTON, Ms. 
SPEIER, and Ms. WASSERMAN SCHULTZ) submitted the following resolu-
tion; which was referred to the Committee on Energy and Commerce 
RESOLUTION 
Expressing support for designation of February 28, 2013, 
as Rare Disease Day. 
Whereas rare diseases and disorders are those which affect 
small patient populations, typically populations smaller 
than 200,000 people in the United States; 
Whereas nearly 7,000 rare diseases affect 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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•HRES 91 IH 
Whereas rare diseases and conditions include epidermolysis 
bullosa, progeria, sickle cell anemia, Tay-Sachs, cystic fi-
brosis, many 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 great strides have been made in research and treat-
ment for rare diseases as a result of the Orphan Drug 
Act; 
Whereas 2013 marks the 30th anniversary of the Orphan 
Drug Act and therefore a time to reflect upon its suc-
cesses to date and challenges to be addressed in the fu-
ture; 
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; 
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 spon-
sors Rare Disease Day in the United States to increase 
public awareness of rare diseases; 
Whereas Rare Disease Day has become a global event occur-
ring annually on the last day of February and observed 
in more than 60 countries in 2012; 
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•HRES 91 IH 
Whereas Rare Disease Day was observed in the United 
States for the first time on February 28, 2009; 
Whereas February 28, 2013, would be an appropriate date to 
designate as Rare Disease Day; and 
Whereas Rare Disease Day is anticipated to be observed glob-
ally in years to come, providing hope and information 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-
ments, diagnostics, and cures for, rare diseases and 
disorders. 
Æ 
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