February 26, 2010
Posted: 07:01 PM ET
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By Peter Saltonstall
While the eyes of the nation are directed toward Washington and the ongoing Health Care Summit, I wanted to take the opportunity to raise an issue that too often flies below the radar of the collective health consciousness – rare diseases.
In the United States, “rare” refers to conditions affecting fewer than 200,000 Americans. According to the National Institutes of Health (NIH) there are nearly 7,000 such diseases. These might sound like relatively small numbers on the surface, but collectively, nearly 30 million Americans suffer from these uncommon—and in some cases, unknown—conditions. That’s one out of every ten individuals in this country alone.
Across the nation, patients are plagued by unexplainable symptoms and a general lack of awareness regarding their conditions, forcing them to endure dismissals and misdiagnoses before ever receiving a proper diagnosis.
In support of the struggle and bravery of these patients, the National Organization for Rare Disorders (NORD) is celebrating the second annual Rare Disease Day in the United States this Sunday, February 28. NORD is collecting patient stories, photos and videos to raise awareness of specific rare diseases, to be featured on a special website for Rare Disease Day U.S. activities: www.rarediseaseday.us. NORD, along with its 150 member organizations and partners, serves as an advocate for these patients by heightening awareness of their conditions and the need for increased research funding for effective treatments.
One of these partners is Discovery Health, a television network well-known in the rare disease community for its popular medical mystery programming. Discovery Health has joined NORD for the second consecutive year as media partner for Rare Disease Day. In honor of the occasion, Discovery Health will premiere “Disease Detectives” at 8 PM ET/PT, an hour-long special featuring the first televised look into the NIH’s Undiagnosed Diseases Program (UDP), a unique program that combines the scientific and medical expertise with our enhanced resources in order to identify some of the most complex and problematic medical cases.
Although progress has been made in recent years, approximately 15 million Americans have rare diseases for which there still is no approved treatment. I encourage you to learn more about rare diseases—as the odds are you already know someone dealing with such a condition.
To learn more about NORD, visit www.rarediseases.org.
You can also CLICK HERE to learn more about Disease Detectives on Discovery Health.
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