[Congressional Record (Bound Edition), Volume 159 (2013), Part 2]
[Extensions of Remarks]
[Page 2153]
[From the U.S. Government Publishing Office, www.gpo.gov]




                      RECOGNIZING RARE DISEASE DAY

                                 ______
                                 

                         HON. STEPHEN F. LYNCH

                            of massachusetts

                    in the house of representatives

                      Thursday, February 28, 2013

  Mr. LYNCH. Mr. Speaker, today, February 28, 2013, marks the sixth 
annual International Rare Disease Day, a day to raise awareness of the 
nearly 7,000 rare diseases affecting 30 million Americans, or about one 
in ten people. Here in the United States, any disease affecting 200,000 
people or fewer is considered rare.
  Rare Disease Day is also an opportunity to celebrate the life-saving 
advances in science and research that continue to transform the 
diagnosis, treatment, and standard of care for many orphan diseases, 
thanks in no small part to the advocacy efforts of the medical 
community, patients and their families, and rare disease organizations.
  In my congressional district, I have met with a number of 
constituents and their families whose lives have been impacted by rare 
diseases, cystic fibrosis among them.
  Cystic fibrosis is a genetic disease affecting approximately 30,000 
children and adults in the United States and is characterized by a 
reduction in the flow of salt and water across cell membranes, which 
leads to the buildup of thick, sticky mucus in the lungs. In 1955, with 
limited therapies available, children with cystic fibrosis were not 
expected to live long enough to attend elementary school. Today, due to 
significant improvements in medical treatment and care, people with the 
disease are living longer, healthier lives. The median predicted age of 
survival now stands at 38 years.
  Today, I have never been more hopeful of the promise science holds 
for all patients affected by rare diseases; however, there remains much 
work to be done. On this sixth annual International Rare Disease Day, I 
join with patients and their families in urging my colleagues to think 
about what more Congress can do to help bring hope to those suffering 
from rare diseases.

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