[Congressional Record Volume 158, Number 32 (Wednesday, February 29, 2012)]
[Senate]
[Pages S1143-S1144]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                            RARE DISEASE DAY

  Mr. REID. Mr. President, I ask unanimous consent that the Senate 
proceed to the consideration of S. Res. 383.
  The PRESIDING OFFICER. Without objection, it is so ordered. The clerk 
will report the resolution by title.
  The bill clerk read as follows:

       A resolution (S. Res. 383) designating February 29, 2012, 
     as ``Rare Disease Day.''

  There being no objection, the Senate proceeded to consider the 
resolution.
  Mr. REID. Mr. President, I ask unanimous consent that the resolution 
be agreed to, the preamble be agreed to, the motion to reconsider be 
laid upon the table, with no intervening action or debate, and that any 
statements relating to the measure be printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The resolution (S. Res. 383) was agreed to.
  The preamble was agreed to.
  The resolution, with its preamble, reads as follows:

                              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 S1144]]

       (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.

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