[Congressional Record Volume 164, Number 62 (Tuesday, April 17, 2018)]
[Extensions of Remarks]
[Pages E481-E482]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       WORLD HEMOPHILIA DAY 2018

                                 ______
                                 

                          HON. JOSEPH CROWLEY

                              of new york

                    in the house of representatives

                        Tuesday, April 17, 2018

  Mr. CROWLEY. Mr. Speaker, I rise today to recognize April 17, 2018 as 
World Hemophilia

[[Page E482]]

Day. This is a day when the international community comes together to 
raise awareness about hemophilia and other bleeding disorders It is a 
day when we also reaffirm our commitment to the individuals across the 
globe who are living with this dangerous chronic disease.
  Hemophilia is a genetic bleeding disorder that prevents blood from 
clotting normally, leading to uncontrolled bleeding in different parts 
of the body. Left untreated, the deep internal bleeding associated with 
hemophilia can lead to permanent damage of organs and tissues as well 
as potentially fatal outcomes. Additionally, people with hemophilia are 
at increased risk of developing heart disease, HIV infection, and 
kidney bleeding as time passes.
  Hemophilia is considered a rare disease, but it impacts 20,000 people 
in the United States and more than 400,000 people worldwide. There is 
no cure for hemophilia, and three-fourths of patients have inadequate 
access to treatment. When treatment is accessible, it is expensive, 
leading to costs as high as $250,000 per year.
  As the founder of the Congressional Rare Disease Caucus, I know that 
much progress has been made in improving access to research funding for 
rare diseases like hemophilia. However, there is more that must be done 
to help those struggling with hemophilia obtain needed therapies. With 
today's recognition of World Hemophilia Day, it is my hope that we 
renew our commitment toward achieving accessible, affordable treatment 
for the hundreds of thousands of hemophilia patients across the world.

                          ____________________