[Congressional Record (Bound Edition), Volume 158 (2012), Part 2]
[Senate]
[Pages 2473-2474]
[From the U.S. Government Publishing Office, www.gpo.gov]




SENATE RESOLUTION 383--DESIGNATING FEBRUARY 29, 2012, 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. 383

       Whereas rare diseases and disorders are those diseases and 
     disorders that affect a small patient population, which in 
     the United States is typically a population of fewer than 
     200,000 people;
       Whereas, as of the date of approval of this resolution, 
     nearly 7,000 rare diseases affect 30,000,000 people and their 
     families in the United States;
       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 life-threatening and lack an 
     effective treatment;
       Whereas rare diseases and disorders include epidermolysis 
     bullosa, progeria, sickle cell anemia, Tay-Sachs disease, 
     cystic fibrosis, many childhood cancers, and fibrodysplasia 
     ossificans progressiva;
       Whereas people with a rare disease experience challenges 
     that include difficulty in obtaining an accurate diagnosis, 
     limited treatment options, and difficulty finding a physician 
     or treatment center with expertise in the disease;
       Whereas great strides have been made in research and 
     treatment for rare diseases as a result of the Orphan Drug 
     Act (21 U.S.C. 360aa et seq.);
       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 that 
     occurs 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 expected 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 29, 2012, as ``Rare Disease Day'';
       (2) recognizes the importance of improving awareness and 
     encouraging accurate and early diagnosis of rare diseases and 
     disorders; and

[[Page 2474]]

       (3) supports the commitment of the United States and all 
     countries to improving access to, and developing, new 
     treatments, diagnostics, and cures for rare diseases and 
     disorders.

                          ____________________