[Congressional Record (Bound Edition), Volume 159 (2013), Part 2]
[Senate]
[Pages 1756-1757]
[From the U.S. Government Publishing Office, www.gpo.gov]




SENATE RESOLUTION 57--DESIGNATING FEBRUARY 28, 2013, AS ``RARE DISEASE 
                                 DAY''

  Mr. BROWN (for himself, Mr. Barrasso, Mr. Whitehouse, Mr. Pryor, and 
Mrs. Hagan) submitted the following resolution; which was considered 
and agreed to:

                               S. Res. 57

       Whereas rare diseases and disorders are those that affect a 
     small number of patients, typically less than 200,000 people 
     in the United States;
       Whereas, as of the date of approval of this resolution, 
     nearly 7,000 rare diseases affect approximately 30,000,000 
     people in the United States and their families;

[[Page 1757]]

       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 diseases;
       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 2013 marks the 30th anniversary of the Orphan Drug 
     Act and therefore a time to reflect upon the successes of 
     that Act and the challenges to be addressed in the future;
       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 and was 
     observed in more than 60 countries in 2012;
       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 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, 2013, 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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