Title: A resolution designating February 28, 2021, as "Rare Disease Day".
Policy area: Health

Summary:
This resolution designates February 28, 2021, as Rare Disease Day.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 74 Agreed to Senate (ATS)]

<DOC>






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;
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;
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
    Resolved, That the Senate--
            (1) designates February 28, 2021, 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.
                                 <all>