III 

116TH CONGRESS 

2D SESSION S. RES. 529 

Designating February 29, 2020, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

MARCH 4, 2020 

Mr. BROWN (for himself, Mr. BARRASSO, Mr. MARKEY, Ms. KLOBUCHAR, Mr. 

BOOKER, Mr. WHITEHOUSE, Mr. BLUMENTHAL, Mr. WICKER, and Mr. 

COONS) submitted the following resolution; which was considered and 

agreed to 

RESOLUTION 

Designating February 29, 2020, as ‘‘Rare Disease Day’’. 

Whereas a rare disease or disorder is a disease or disorder 

that affects a small number of patients; 

Whereas, in the United States, a rare disease or disorder 

typically affects fewer than 200,000 individuals; 

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

more than 7,000 rare diseases or disorders affect approximately 30,000,000 individuals in the United States 

and their families; 

Whereas children with rare diseases or disorders account for 

a significant portion of the population affected by rare 

diseases or disorders in the United States; 


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•SRES 529 ATS 

Whereas many rare diseases and disorders are serious and 

life-threatening and lack effective treatments; 

Whereas, as a result of the enactment 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 and disorders; 

Whereas the Food and Drug Administration has made 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 the Food and Drug Administration has 

approved more than 840 orphan indications for drugs 

and biological products for the treatment of rare diseases 

and disorders, millions of individuals in the United States 

have a rare disease or disorder for which there is no approved treatment; 

Whereas limited treatment options and difficulty obtaining 

reimbursement for life-altering and lifesaving treatments 

can be challenging for individuals with rare diseases or 

disorders and their families; 

Whereas rare diseases and disorders include acrodermatitis 

enteropathica, medulloblastoma, Hartnup disease, mast 

cell activation syndrome, Usher syndrome, osteosarcoma, 

Kabuki syndrome, Fanconi anemia, Neurofibromatosis, 

NGLY1 deficiency, Chandler’s syndrome, tularemia, and 

Joubert syndrome; 

Whereas individuals with rare diseases or disorders can experience difficulty in obtaining accurate diagnoses and findVerDate Sep 11 2014 22:36 Mar 04, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6300 E:\BILLS\SR529.ATS SR529

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•SRES 529 ATS 

ing physicians or treatment centers with expertise in 

their rare disease or disorder; 

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 or disorders; 

Whereas the Food and Drug Administration and the National 

Institutes of Health support research on the treatment of 

rare diseases and disorders; 

Whereas 2020 marks the 37th anniversary of the enactment 

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

2049); 

Whereas Rare Disease Day is observed each year on the last 

day of February; 

Whereas, in 2020, Rare Disease Day falls on the rarest of 

days, February 29; 

Whereas Rare Disease Day is a global event that was first 

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

was observed in more than 100 countries in 2019; and 

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

for rare disease and disorder patients around the world: 

Now, therefore, be it 

1 Resolved, That the Senate— 

2 (1) designates February 29, 2020, as ‘‘Rare 

3 Disease Day’’; and 

4 (2) recognizes the importance of, with respect 

5 to rare diseases and disorders— 


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•SRES 529 ATS 

1 (A) improving awareness; 

2 (B) encouraging accurate and early diag3 nosis; and 

4 (C) supporting national and global efforts 

5 to develop effective treatments, diagnostics, and 

6 cures. 

Æ 


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