IV 

116TH CONGRESS 

1ST SESSION H. RES. 161 

Expressing support for the designation of the last day of February each 

year as ‘‘Rare Disease Day’’. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 28, 2019 

Mr. CARSON of Indiana submitted 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 families; 

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; 

Whereas rare diseases and conditions cross the medical spectrum; 


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•HRES 161 IH 

Whereas individuals 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 disease; 

Whereas although over 750 drugs and biologics have been approved 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 obtaining 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 Reauthorization Act of 2017; 

Whereas the 115th Congress passed a 10-year extension of 

the Children’s Health Insurance Program, ensuring coverage for many children with rare diseases; 

Whereas both the Food and Drug Administration and the 

National Institutes of Health have established special offices to support and facilitate rare disease research and 

treatments; 

Whereas the National Organization for Rare Disorders, a 

nonprofit organization established in 1983 to provide 


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•HRES 161 IH 

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 sponsors ‘‘Rare Disease Day’’ in the United States and partners 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 observed in more than 90 countries in 2018; and 

Whereas ‘‘Rare Disease Day’’ is expected to be observed globally in years to come, providing hope and information for 

rare disease patients around the world: Now, therefore, 

be it 

1 Resolved, That the House of Representatives— 

2 (1) supports the designation of ‘‘Rare Disease 

3 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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