[Congressional Record Volume 165, Number 37 (Thursday, February 28, 2019)]
[Senate]
[Pages S1603-S1604]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




SENATE RESOLUTION 90--DESIGNATING FEBRUARY 28, 2019, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN (for himself, Mr. Barrasso, Mr. Whitehouse, Mr. Markey, Mr. 
Blumenthal, Mr. Coons, Ms. Stabenow, Mr. Booker, and Ms. Warren) 
submitted the following resolution; which was considered and agreed to:

                               S. Res. 90

       Whereas a rare disease or disorder is one that affects a 
     small number of patients, which, in the United States, is 
     considered to be a population of fewer than 200,000 
     individuals;
       Whereas, as of the date of the adoption of this resolution, 
     more than 7,000 rare diseases affect as many as 30,000,000 
     people in the United States and their families;
       Whereas children with rare diseases account for a 
     significant portion of the population affected by rare 
     diseases in the United States;
       Whereas many rare diseases are serious and life-threatening 
     and lack effective treatments;
       Whereas, as a result of the Orphan Drug Act (Public Law 97-
     414; 96 Stat. 2049), there have been important advances made 
     in the research of, and treatment for, rare diseases;
       Whereas the Food and Drug Administration has made great 
     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 more than 750 orphan indications for 
     drugs and biological products

[[Page S1604]]

     have been approved by the Food and Drug Administration for 
     the treatment of rare diseases, millions of people in the 
     United States have a rare disease for which there is no 
     approved treatment;
       Whereas lack of access to effective treatments and 
     difficulty in obtaining reimbursement for life-altering, and 
     even life-saving, treatments remain significant challenges 
     for people with rare diseases and their families;
       Whereas rare diseases and conditions include McArdle 
     disease, Ehlers-Danlos syndrome, acoustic neuroma, Paget 
     disease, Landau-Kleffner syndrome, necrotizing fasciitis, 
     mucopolysaccharidosis type I, Rasmussen encephalitis, 
     Sanfilippo syndrome, Prader-Willi syndrome, Wagner syndrome, 
     Barth syndrome, and many rare cancers;
       Whereas people with rare diseases experience challenges 
     that include--
       (1) difficulty in obtaining accurate diagnoses;
       (2) limited treatment options; and
       (3) difficulty finding physicians or treatment centers with 
     expertise in the rare disease affecting the individual;
       Whereas the 115/th/ 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;
       Whereas both the Food and Drug Administration and the 
     National Institutes of Health have established special 
     offices to support and facilitate rare disease research and 
     treatments;
       Whereas the National Organization for Rare Disorders 
     (referred to in this preamble as ``NORD''), a nonprofit 
     organization established in 1983 to provide services to, and 
     advocate on behalf of, patients with rare diseases, remains a 
     critical public voice for people with rare diseases;
       Whereas 2019 marks the 36/th/ anniversary of the enactment 
     of the Orphan Drug Act (Public Law 97-414; 96 Stat. 2049) and 
     the establishment of NORD;
       Whereas NORD sponsors Rare Disease Day in the United States 
     and partners with many other major rare disease organizations 
     to increase public awareness of rare diseases;
       Whereas Rare Disease Day is observed each year on the last 
     day of February;
       Whereas Rare Disease Day is a global event that--
       (1) was first observed in the United States on February 28, 
     2009; and
       (2) was observed in more than 90 countries in 2018; and
       Whereas Rare Disease Day is expected to be observed 
     globally for years to come, providing hope and information 
     for rare disease patients around the world: Now, therefore, 
     be it
       Resolved, That the Senate--
       (1) designates February 28, 2019, as ``Rare Disease Day'';
       (2) recognizes the importance of improving awareness and 
     encouraging accurate and early diagnosis of rare diseases and 
     disorders; and
       (3) supports a national and global commitment to improving 
     access to, and developing new treatments, diagnostics, and 
     cures for, rare diseases and disorders.

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