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




                      RECOGNIZING RARE DISEASE DAY

  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 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.

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