III 

116TH CONGRESS 

1ST SESSION S. RES. 90 

Designating February 28, 2019, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 28, 2019 

Mr. BROWN (for himself, Mr. BARRASSO, Mr. WHITEHOUSE, Mr. MARKEY, 

Mr. BLUMENTHAL, Mr. COONS, Ms. STABENOW, Mr. BOOKER, and Ms. 

WARREN) submitted the following resolution; which was considered and 

agreed to 

RESOLUTION 

Designating February 28, 2019, as ‘‘Rare Disease Day’’. 

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

number of patients, which, in the United States, is considered to be a population of fewer than 200,000 individuals; 

Whereas, as of the date of the adoption of this resolution, 

more than 7,000 rare diseases affect as many as 

30,000,000 people in the United States and their families; 

Whereas children with rare diseases account for a significant 

portion of the population affected by rare diseases in the 

United States; 

Whereas many rare diseases are serious and life-threatening 

and lack effective treatments; 


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•SRES 90 ATS 

Whereas, as a result of the Orphan Drug Act (Public Law 

97–414; 96 Stat. 2049), there have been important advances made in the research of, and treatment for, rare 

diseases; 

Whereas the Food and Drug Administration has made great 

strides in gathering patient perspectives to inform the 

drug review process as part of the Patient-Focused Drug 

Development program, an initiative that was reaffirmed 

under the FDA Reauthorization Act of 2017 (Public Law 

115–52; 131 Stat. 1005); 

Whereas, although more than 750 orphan indications for 

drugs and biological products have been approved by the 

Food and Drug Administration for the treatment of rare 

diseases, millions of people in the United States have a 

rare disease for which there is no approved treatment; 

Whereas lack of access to effective treatments and difficulty 

in obtaining reimbursement for life-altering, and even 

life-saving, treatments remain significant challenges for 

people with rare diseases and their families; 

Whereas rare diseases and conditions include McArdle disease, Ehlers-Danlos syndrome, acoustic neuroma, Paget 

disease, Landau-Kleffner syndrome, necrotizing fasciitis, 

mucopolysaccharidosis type I, Rasmussen encephalitis, 

Sanfilippo syndrome, Prader-Willi syndrome, Wagner 

syndrome, Barth syndrome, and many rare cancers; 

Whereas people with rare diseases experience challenges that 

include— 

(1) difficulty in obtaining accurate diagnoses; 

(2) limited treatment options; and 

(3) difficulty finding physicians or treatment centers 

with expertise in the rare disease affecting the individual; 


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

the Children’s Health Insurance Program under title 

XXI of the Social Security Act (42 U.S.C. 1397aa et 

seq.), ensuring health insurance 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 (referred to in this preamble as ‘‘NORD’’), 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 2019 marks the 36th anniversary of the enactment 

of the Orphan Drug Act (Public Law 97–414; 96 Stat. 

2049) and the establishment of NORD; 

Whereas NORD 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 is a global event that— 

(1) was first observed in the United States on February 28, 2009; and 

(2) was observed in more than 90 countries in 2018; 

and 

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


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•SRES 90 ATS 

for rare disease patients around the world: Now, therefore, be it 

1 Resolved, That the Senate— 

2 (1) designates February 28, 2019, as ‘‘Rare 

3 Disease 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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