III 

115TH CONGRESS 

2D SESSION S. RES. 423 

Designating February 28, 2018, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

MARCH 1, 2018 

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

Ms. WARREN, Ms. STABENOW, Mr. WICKER, Mr. BOOKER, Ms. KLOBUCHAR, and Mr. HATCH) submitted the following resolution; which was 

considered and agreed to 

RESOLUTION 

Designating February 28, 2018, 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 less than 200,000 individuals; 

Whereas, as of February 2018, nearly 7,000 rare diseases affect approximately 30,000,000 people in the United 

States and their families; 

Whereas children with rare diseases account for about half 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 423 ATS 

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

97–414; 96 Stat. 2049), important advances have been 

made in the research and treatment of 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 originated under 

the Food and Drug Administration Safety and Innovation Act (Public Law 112–144; 126 Stat. 993); 

Whereas, although more than 600 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 still remain significant challenges 

for people with rare diseases and their families; 

Whereas rare diseases and conditions include aplastic anemia, 

porphyria, spina bifida, stiff person syndrome, Gaucher 

disease, diffuse pulmonary lymphangiomatosis, 

adrenoleukodystrophy, Noonan syndrome, Rett syndrome, 

Moebius syndrome, Castleman Disease, epidermolytic 

ichthyosis, and short bowel syndrome; 

Whereas people with rare diseases experience challenges that 

include— 

(1) difficulty in obtaining an accurate diagnosis; 

(2) limited treatment options; and 

(3) difficulty finding physicians or treatment centers 

with expertise in rare diseases; 


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•SRES 423 ATS 

Whereas the rare disease community gained important new 

tools during the 115th Congress with the enactment of 

the FDA Reauthorization Act of 2017 (Public Law 115– 

52; 131 Stat. 1005), which— 

(1) advanced and facilitated the development and 

timely approval of drugs and biologics for rare diseases, 

including diseases affecting children; 

(2) reauthorized user fees to help deliver safe and 

effective treatments to individuals with rare diseases; 

(3) supported the utilization of real-world evidence; 

(4) supported patient-focused drug development; and 

(5) supported the National Evaluation System for 

Health Technology; 

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 as ‘‘NORD’’ in this preamble), 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 2018 marks the 35th anniversary of the enactment 

of the Orphan Drug Act 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; 


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•SRES 423 ATS 

Whereas Rare Disease Day is a global event that was first 

observed in the United States on February 28, 2009, and 

observed in more than 94 countries in 2017; and 

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

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

1 Resolved, That the Senate— 

2 (1) designates February 28, 2018, 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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