[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. Res. 529 Agreed to Senate (ATS)]

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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;
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 finding 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
    Resolved, That the Senate--
            (1) designates February 29, 2020, 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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