[Congressional Record (Bound Edition), Volume 157 (2011), Part 2]
[Senate]
[Page 2345]
[From the U.S. Government Publishing Office, www.gpo.gov]




 SENATE RESOLUTION 74--DESIGNATES FEBRUARY 28, 2011, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN of Ohio (for himself and Mr. Barrasso) submitted the 
following resolution; which was considered and agreed to:

                               S. Res. 74

       Whereas rare diseases and disorders are those which affect 
     small patient populations, typically populations smaller than 
     200,000 individuals in the United States;
       Whereas as of the date of approval of this resolution, 
     nearly 7,000 rare diseases affect 30,000,000 Americans and 
     their families;
       Whereas children with rare genetic diseases account for 
     more than half of the population affected by rare diseases in 
     the United States;
       Whereas many rare diseases are serious, life-threatening, 
     and lack an effective treatment;
       Whereas rare diseases and conditions include epidermolysis 
     bullosa, progeria, sickle cell anemia, Tay-Sachs, cystic 
     fibrosis, many childhood cancers, and fibrodysplasia 
     ossificans progressiva;
       Whereas people with rare diseases experience challenges 
     that include difficulty in obtaining an accurate diagnosis, 
     limited treatment options, and difficulty finding physicians 
     or treatment centers with expertise in their disease;
       Whereas great strides have been made in research and 
     treatment for rare diseases as a result of the Orphan Drug 
     Act (Public Law 97-414; 96 Stat. 2049) and amendments made by 
     that Act;
       Whereas both the Food and Drug Administration and the 
     National Institutes of Health have established special 
     offices to advocate for rare disease research and treatments;
       Whereas the National Organization for Rare Disorders, an 
     organization established in 1983 to provide services to, and 
     advocate on behalf of, patients with rare diseases, was a 
     primary force behind the enactment of the Orphan Drug Act and 
     remains a critical public voice for people with rare 
     diseases;
       Whereas the National Organization for Rare Disorders 
     sponsors Rare Disease Day in the United States to increase 
     public awareness of rare diseases;
       Whereas Rare Disease Day has become a global event 
     occurring annually on the last day of February;
       Whereas Rare Disease Day was observed in the United States 
     for the first time on February 28, 2009; and
       Whereas Rare Disease Day is anticipated to be observed 
     globally in 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, 2011, 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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