[Congressional Record (Bound Edition), Volume 158 (2012), Part 2]
[Extensions of Remarks]
[Page 2583]
[From the U.S. Government Publishing Office, www.gpo.gov]




               RECOGNIZING INTERNATIONAL RARE DISEASE DAY

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                         HON. TIMOTHY H. BISHOP

                              of new york

                    in the house of representatives

                      Wednesday, February 29, 2012

  Mr. BISHOP of New York. Mr. Speaker, I rise to recognize the fifth 
International Rare Disease Day, a day reserved to promote awareness of 
the approximately 6,800 rare diseases afflicting 30 million Americans.
  In the United States, a rare disease is one that affects fewer than 
200,000 people. The National Organization of Rare Disorders estimates 
that one in ten Americans are suffering today from a rare disease. 
Thanks to patients and their families, the medical community, and 
organizations established to advocate for greater awareness and 
research, advances have been in the diagnosis and treatment of many of 
these diseases. With a renewed commitment to scientific research and 
discovery, we can provide much more than treatments and disease 
management to millions of our suffering constituents, we can provide 
cures.
  In my congressional district, I have met with countless constituents 
and their families whose lives have, in one way or another, been 
impacted by a rare disease such as Epidermolysis Bullosa, commonly 
known as EB, which is characterized by the presence of extremely 
fragile skin that results in the development of recurrent, painful 
blisters, open sores, and in some forms of the disease, in disfiguring 
scars, disabling musculoskeletal deformities, and internal blistering. 
EB affects approximately 12,000 individuals in the United States.
  I have also met with families impacted by Duchenne Muscular 
Dystrophy. This is a form of muscular dystrophy found in boys who 
experience a progressive loss of muscle function. Parent Project 
Muscular Dystrophy estimates that 15,000 young men suffer from 
Ducherme.
  Marfan Syndrome is another rare disease that has impacted my 
constituents. Marfan Syndrome is a disorder of the connective tissue 
that can affect the skeletal, cardiovascular, and nervous systems, the 
skin, eyes, and lungs. While there is no cure, an early diagnosis and 
proper treatment can provide a normal life-span. The National Marfan 
Foundation estimates that 200,000 are affected by Marfan Syndrome.
  Finally, I would like to take this opportunity to also mention 
Dysautonomia, a group of disorders that cause a breakdown or failure of 
the autonomic nervous system which regulates involuntary functions of 
the body: heart rate, blood pressure, body temperature, and 
perspiration. Some forms of this order are characterized as rare 
diseases such as Multiple System Atrophy and Familial Dysautonomia. 
Although other forms such as Postural Orthostatic Tachycardia Syndrome, 
Neurocardiogenic Syncope, and Autoimmune Autonomic Ganglionopathy are 
not, this does not detract from their importance and should not result 
in a federal commitment less than resolute in discovering advances to 
help increase accurate diagnosis and better treatment. Together, the 
National Dysautonomia Research Foundation estimates that over one 
million Americans are impacted by an autonomic system disorder.
  Today, Mr. Speaker, I join with patients, their families, and 
millions in the United States and around to the world to recognize this 
important day. I urge my colleagues to take a moment today to think 
about what more Congress can do to help Americans and their families 
suffering from rare diseases. Together, we can do more for all.

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