February 25, 2019 - Issue: Vol. 165, No. 34 — Daily Edition116th Congress (2019 - 2020) - 1st Session

[Page H2088]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                           RARE DISEASE WEEK

  (Mr. JOHNSON of Georgia asked and was given permission to address the 
House for 1 minute and to revise and extend his remarks.)
  Mr. JOHNSON of Georgia. Mr. Speaker, I rise today in recognition of 
Rare Disease Week.
  Around 350 million people, worldwide, suffer from a rare disease. 
That is more than the number of people who live in the United States, 
alone, and it is particularly alarming when we consider how few 
resources are available to those battling a rare disease.
  In fact, of the 7,000 rare diseases in existence, half of them don't 
have a designated foundation or research support group, and nearly 90 
percent lack an FDA-approved treatment.
  As a member of the Rare Disease Congressional Caucus, I urge my 
colleagues to support measures that would increase funding for research 
and put our resources into the development and accessibility of 
lifesaving treatments. Treatments should not be as rare as the diseases 
they heal.

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