[Congressional Record (Bound Edition), Volume 162 (2016), Part 2]
[Extensions of Remarks]
[Pages 2798-2799]
[From the U.S. Government Publishing Office, www.gpo.gov]




                       HONORING RARE DISEASE WEEK

                                 ______
                                 

                            HON. TOM MARINO

                            of pennsylvania

                    in the house of representatives

                         Monday, March 7, 2016

  Mr. MARINO. Mr. Speaker, I rise today to bring attention to rare 
diseases as we recognize ``Rare Disease Week.''
  A ``rare disease,'' also referred to as an orphan disease, is any 
disease that affects a small percentage of the population. The National 
Institute of Health defines a rare disease as one that affects less 
than 200,000 people in the United States. The impact of rare diseases 
is certainly not small; there are over 7,000 rare diseases that affect 
30 million people, or 10% of the United States population.
  As the father of someone who suffers from Cystic Fibrosis, a rare 
disease affecting only 30,000 people in the United States, I know the 
difficulty of living with a rare disease and the financial burdens of 
care and treatment for families. Cystic Fibrosis requires specialized 
care that can cost upwards of $15,000 a year and hundreds of thousands 
of dollars over the course of a lifetime. I have done everything I can 
to make sure that my daughter receives the highest quality care as she 
continues her fight against Cystic Fibrosis.
  Thanks to advancements in medicine, the average life expectancy of 
someone who suffers from Cystic Fibrosis is now 37. This is much 
different than 50 years ago when a child diagnosed with the disease 
would be lucky to live to their teens.
  Every year we recognize rare disease week as a way to raise awareness 
and to stress the

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importance of funding rare disease research. It is my hope one day we 
can make rare, incurable diseases a thing of the past.
  

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