IV 
116TH CONGRESS 
2D SESSION 
H. RES. 840 
Expressing support for the designation of the last day of February each 
year as ‘‘Rare Disease Day’’. 
IN THE HOUSE OF REPRESENTATIVES 
FEBRUARY 7, 2020 
Mr. CARSON of Indiana (for himself, Mr. HUDSON, Mrs. AXNE, Mrs. BEATTY, 
Mr. BILIRAKIS, Mrs. BROOKS of Indiana, Mr. BUTTERFIELD, Mr. DEFA-
ZIO, Mr. FITZPATRICK, Ms. LEE of California, Mr. MALINOWSKI, Ms. 
MATSUI, Ms. ROYBAL-ALLARD, Mr. RUSH, and Mr. VISCLOSKY) sub-
mitted the following resolution; which was referred to the Committee on 
Energy and Commerce 
RESOLUTION 
Expressing support for the designation of the last day of 
February each year 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 more than 7,000 rare diseases affect approximately 
30,000,000 people in the United States and their fami-
lies; 
Whereas children with rare diseases account for a significant 
proportion of the population affected by rare diseases; 
Whereas many rare diseases are serious, life-threatening, and 
lack an effective treatment; 
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•HRES 840 IH 
Whereas rare diseases and conditions cross the medical spec-
trum; 
Whereas individuals with rare diseases experience challenges 
that include difficulty in obtaining an accurate diagnosis, 
limited treatment options, and difficulty finding physi-
cians or treatment centers with expertise in their disease; 
Whereas although over 840 drugs and biologics have been ap-
proved for the treatment of rare diseases by the Food 
and Drug Administration, millions of people in the 
United States have rare diseases for which there is no 
approved treatment; 
Whereas lack of effective treatments and difficulty in obtain-
ing reimbursement for life-altering and often life-saving 
treatments remain significant challenges for individuals 
with rare diseases and their families; 
Whereas, as a result of the Orphan Drug Act, there have 
been important advances in research of and treatment for 
rare diseases; 
Whereas the Food and Drug Administration has taken great 
strides in gathering patient perspectives to inform the 
drug review process as part of its Patient-Focused Drug 
Development program, an initiative that was reaffirmed 
under the Food and Drug Administration Reauthoriza-
tion Act of 2017; 
Whereas the 115th Congress passed a 10-year extension of 
the Children’s Health Insurance Program, ensuring cov-
erage for many children with rare diseases; 
Whereas both the Food and Drug Administration and the 
National Institutes of Health have established special of-
fices to support and facilitate rare disease research and 
treatments; 
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•HRES 840 IH 
Whereas the National Organization for Rare Disorders, a 
nonprofit 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 the National Organization for Rare Disorders spon-
sors ‘‘Rare Disease Day’’ in the United States and part-
ners with many other major rare disease organizations 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’’ was observed in the United 
States for the first time on February 28, 2009, and ob-
served in more than 100 countries in 2019; and 
Whereas ‘‘Rare Disease Day’’ is expected 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-
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ments, diagnostics, and cures for, rare diseases and 
disorders. 
Æ 
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