Rare Disease Day 2013
February 28 is the fifth annual U.S. Rare Disease Day. The event, primarily supported by the National Organization for Rare Disorders (NORD), was created to place a spotlight on the nearly 7,000 rare diseases affecting nearly 30 million Americans. Mesothelioma, an asbestos-related cancer, is one of the rare, or "orphan," diseases or conditions affecting one in ten Americans.
In the United States an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. In the case of mesothelioma, 3,000 Americans are diagnosed with the disease each year. Rare Disease Day is an international advocacy day designated to raise public awareness of rare diseases and to bring widespread recognition of rare diseases as a global concern.
"There are nearly 30 million Americans—and millions more around the world—affected by rare diseases," said Peter L. Saltonstall, president and CEO of NORD. "Everyone knows someone with a rare disease. But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."
Due to the relative rarity of mesothelioma, and other orphan diseases, managing the disease and trying to find appropriate treatment can be overwhelming to the patients and their families. In fact, according to government statistics, between 85 and 90 percent of orphan diseases are serious or life-threatening, yet only about 200 of them currently have any effective treatments.
The global theme for 2013 is "Rare Disorders Without Borders." This year, the day takes on special significance in the U.S. because this year is also the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.
According to NORD, Rare Disease Day 2013 activities in the U.S. will include awareness events at several State Houses, a Rare Disease Research Hall of Fame, a Handprints Across America photo gallery, and an event at the National Institutes of Health (NIH) in Bethesda, MD.
For more information about Rare Disease Day activities in the U.S, see www.rarediseaseday.us. For information about global activities, see www.rarediseaseday.org.
More articles by Nancy Meredith
Nancy Meredith is a blog and web content writer with more than 20 years of professional experience in the Information Technology industry. She has been writing about Mesothelioma for 4 years. Follow Nancy on Google+
