[Congressional Record Volume 166, Number 43 (Wednesday, March 4, 2020)]
[Senate]
[Page S1479]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 529--DESIGNATING FEBRUARY 29, 2020, AS ``RARE DISEASE 
                                 DAY''

  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:

                              S. Res. 529

       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.

                          ____________________