III 

117TH CONGRESS 

1ST SESSION S. RES. 74 

Designating February 28, 2021, as ‘‘Rare Disease Day’’. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 24, 2021 

Mr. BROWN (for himself, Mr. BARRASSO, Mr. BLUMENTHAL, Mr. SCOTT of 

South Carolina, Ms. KLOBUCHAR, Mr. WICKER, Mr. MARKEY, and Mr. 

BOOKER) submitted the following resolution; which was considered and 

agreed to 

RESOLUTION 

Designating February 28, 2021, 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 1 in 10 individuals in the United States; 

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; 

Whereas many rare diseases and disorders are serious and 

life-threatening and lack effective treatments; 


pamtmann on DSKBC07HB2PROD with BILLS
2 

•SRES 74 ATS 

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 880 orphan indications for drugs 

and biological products for the treatment of rare diseases 

and disorders, 90 percent of individuals in the United 

States with a rare disease or disorder are not receiving 

an FDA-approved treatment for their condition; 

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 sickle cell anemia, spinal muscular atrophy, common variable immune 

deficiency, median arcuate ligament syndrome, glycogen 

storage disease type V, pulmonary hypertension, hemophilia, cystic fibrosis, sarcoidosis, amyotrophic lateral 

sclerosis, and autosomal recessive polycystic kidney disease; 

Whereas individuals with rare diseases or disorders can experience difficulty in obtaining accurate diagnoses and finding physicians or treatment centers with expertise in 

their rare disease or disorder; 


pamtmann on DSKBC07HB2PROD with BILLS
3 

•SRES 74 ATS 

Whereas the 116th Congress passed a 4-year extension of the 

Rare Pediatric Disease Priority Review Voucher program 

under section 529(b) of the Federal Food, Drug, and 

Cosmetic Act (21 U.S.C. 360ff(b)) as part of the Consolidated Appropriations Act, 2021 (Public Law 116–260; 

134 Stat. 1182), providing an incentive for the development of therapies for children with rare diseases; 

Whereas the 116th Congress passed the Advancing Care for 

Exceptional Kids Act (Public Law 116–16; 133 Stat. 

852), improving access to coordinated, patient-centered 

health care for children with complex and rare medical 

conditions in Medicaid; 

Whereas the Food and Drug Administration and the National 

Institutes of Health support research on the treatment of 

rare diseases and disorders; 

Whereas 2021 marks the 38th 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 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 2020; 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 28, 2021, as ‘‘Rare 

3 Disease Day’’; and 


pamtmann on DSKBC07HB2PROD with BILLS
4 

•SRES 74 ATS 

1 (2) recognizes the importance of, with respect 

2 to rare diseases and disorders— 

3 (A) improving awareness; 

4 (B) encouraging accurate and early diag5 nosis; and 

6 (C) supporting national and global efforts 

7 to develop effective treatments, diagnostics, and 

8 cures. 

Æ 


pamtmann on DSKBC07HB2PROD with BILLS