[Congressional Record Volume 160, Number 34 (Friday, February 28, 2014)]
[House]
[Page H2068]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                MAKING RARE DISEASES A THING OF THE PAST

  (Mr. MARINO asked and was given permission to address the House for 1 
minute.)
  Mr. MARINO. Mr. Speaker, I rise today to bring attention to an issue 
that affects millions of American citizens.
  A rare disease is defined as a disease that affects fewer than 
200,000 people. There are over 7,000 rare diseases that affect close to 
30 million people.
  My family knows the difficulties of dealing with a rare disease. My 
daughter, Chloe, has suffered from cystic fibrosis her entire life. CF 
is a life-threatening rare disease that causes mucus to build up and 
block major organs. Chloe is one of only 30,000 people affected by this 
disease in the United States.
  As a rare disease, CF requires specialized care that can cost an 
individual hundreds of thousands of dollars over their lifetime. Even 
though there have been advancements in medicine, a CF sufferer may only 
survive into their thirties. This is much different than it was 50 
years ago, where a child was lucky to live to the age of 10.
  Today we observe CF and all other rare diseases to stress the 
importance of funding for rare disease research. Hopefully, we can make 
rare diseases a thing of the past.

                          ____________________