[Congressional Record (Bound Edition), Volume 158 (2012), Part 2]
[Senate]
[Pages 2479-2480]
[From the U.S. 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. BROWN of Ohio. Mr. President, since 2009 the last day of February 
has been observed as Rare Disease Day. Each rare disease affects a 
small patient population--less than 200,000 people--but there are more 
than 7,000 rare diseases that, combined, affect 30 million Americans. 
Sadly, children with rare genetic diseases account for more than half 
of the rare disease population.
  Patients with rare diseases--such as Duchenne muscular dystrophy, 
Tay-Sachs, epidermolysis bullosa, sickle cell anemia, cystic fibrosis, 
and many childhood cancers--face unique challenges. Too many of these 
conditions lack effective treatments and cures, and too often people 
with rare diseases experience challenges in obtaining an accurate 
diagnosis. In addition, there is often difficulty finding physicians or 
treatment centers with the necessary expertise in rare diseases or 
disorders.
  Great strides have been made in research and treatment as the result 
of the Orphan Drug Act, but more must be done to prevent, identify, 
combat, and treat rare diseases. By designating

[[Page 2480]]

February 29, 2012, as Rare Disease Day, I hope we create greater 
awareness of these conditions, encourage accurate and early diagnosis 
of rare diseases and disorders, and help demonstrate and support a 
national and global commitment to improve treatment options for 
individuals with rare diseases and disorders.
  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
       (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.

                          ____________________