[Congressional Record (Bound Edition), Volume 162 (2016), Part 4]
[Extensions of Remarks]
[Pages 5642-5643]
[From the U.S. Government Publishing Office, www.gpo.gov]




              RECOGNIZING APRIL 17 AS WORLD HEMOPHILIA DAY

                                 ______
                                 

                          HON. SCOTT H. PETERS

                             of california

                    in the house of representatives

                         Tuesday, May 10, 2016

  Mr. PETERS. Mr. Speaker, I rise today to recognize April 17 as World 
Hemophilia Day.
  Hemophilia is among the range of disorders that impacts fewer than 
200,000 annually--thereby classifying it as a rare disease. It is a 
genetic disorder in which the blood doesn't clot, causing excessive 
bleeding and easy bruising. Without proper treatment, it can lead to 
organ damage, serious joint and muscle problems, and terrible pain. 
More than 20,000 Americans suffer from hemophilia, including an 
estimated 400 newborns.
  In my district, the Hemophilia Association of San Diego County 
provides educational programming and support services for families in 
San Diego. They have worked with national organizations and industry 
partners to improve healthcare, support research, and provide necessary 
resources for the bleeding disorders community since 1973.
  Today, there are about 141 federally-funded treatment centers and 
programs across the country, including two Hemophilia Treatment Centers 
in San Diego; Rady Children's Hospital and the University of California 
San Diego Health. The financial burden for individuals with severe 
hemophilia is often $250,000

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a year or more. It is important to acknowledge the financial burden for 
individuals with severe hemophilia and their families. We must continue 
to invest in research and support efforts to make treatment more 
accessible to help improve the quality of life for people with 
Hemophilia.

                          ____________________