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.
Title IV of Senate Resolution 4, agreed to by the Senate on February 4, 1977, calls for establishment of a system for a computerized schedule of all meetings and hearings of Senate committees, subcommittees, joint committees, and committees of conference. This title requires all such committees to notify the Office of the Senate Daily Digest--designated by the Rules Committee--of the time, place, and purpose of the meetings, when scheduled, and any cancellations or changes in the meetings as they occur.
As an additional procedure along with the computerization of this information, the Office of the Senate Daily Digest will prepare this information for printing in the Extensions of Remarks section of the Congressional Record on Monday and Wednesday of each week.
Meetings scheduled for Thursday, March 1, 2012 may be found in the Daily Digest of today's Record.
Armed Services To hold hearings to examine U.S. Central Command and U.S. Special Operations Command in review of the Defense Authorization request for fiscal year 2013 and the Future Years Defense Program; with the possibility of a closed session in SVC 217 following the open session.
- February 15, 2013
- February 29, 2012
- February 13, 2007
- July 18, 2002
- February 28, 2006
- September 24, 2001
- June 5, 2001
- February 29, 2012
- March 4, 2013
- July 23, 2001