[Congressional Record Volume 168, Number 32 (Thursday, February 17, 2022)]
[Senate]
[Pages S793-S794]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 523--DESIGNATING FEBRUARY 28, 2022, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN (for himself, Mr. Barrasso, Ms. Klobuchar, Mr. Whitehouse, 
Mr. Booker, Mr. Blumenthal, Mr. Markey, Mr. Wicker, Mr. Scott of South 
Carolina, and Mr. Casey) submitted the following resolution; which was 
considered and agreed to:

[[Page S794]]

  


                              S. Res. 523

       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 
     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;
       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 (FDA) 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 1,000 orphan indications for drugs and 
     biological products for the treatment of rare diseases and 
     disorders, 95 percent of rare diseases do not have 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, amyotrophic lateral 
     sclerosis, thyroid eye disease, myotonic dystrophy, t-cell 
     prolymphocytic leukemia, microtia, meatal atresia, and 
     conductive deafness;
       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;
       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 2022 marks the 39th 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 2021; 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
       Resolved, That the Senate--
       (1) designates February 28, 2022, as ``Rare Disease Day''; 
     and
       (2) recognizes the importance of, with respect to rare 
     diseases and disorders--
       (A) improving awareness;
       (B) encouraging accurate and early diagnosis; and
       (C) supporting national and global efforts to develop 
     effective treatments, diagnostics, and cures.

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