[Congressional Record (Bound Edition), Volume 158 (2012), Part 2]
[House]
[Page 2285]
[From the U.S. Government Publishing Office, www.gpo.gov]




        NATIONAL INSTITUTES OF HEALTH OBSERVES RARE DISEASE DAY

  (Mr. BURGESS asked and was given permission to address the House for 
1 minute and to revise and extend his remarks.)
  Mr. BURGESS. Mr. Speaker, this week is Rare Disease Day, which will 
take place on February 29. I want to acknowledge the work of the 
National Institutes of Health in their efforts to bring down rare 
diseases. I also want to acknowledge the thousands of Americans who are 
afflicted with diseases whose systems are so complex that they simply 
remain undiagnosed. The majority of these disorders have genetic 
causes, and over half affect children.
  The National Institutes of Health has joined a worldwide effort with 
more than 40 countries to recognize and seek better ways to diagnose 
and treat patients. On February 29, the NIH is observing the fifth 
annual Rare Disease Day and hosting a daylong program of activities 
highlighting the rare disease research community.
  In conjunction with that, NIH Director Dr. Francis Collins will 
announce the launch of the Genetic Testing Registry. This is an online 
tool developed by NIH scientists providing health care providers and 
patients access to information on genetic tests. I also have 
legislation that would expand on these efforts.
  This Wednesday, February 29, the rarest of days on the calendar, we 
will pause to honor those who are working hard to research, diagnose, 
treat, and empower patients with the rarest of rare diseases. I want to 
acknowledge the work of the NIH. I'm grateful that they're organizing 
an event like Rare Disease Day.

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