According to the National Organization for Rare Disorders (NORD), one in every ten people have a rare disease. There are nearly 7,000 known rare diseases that, when taken together, affect the lives and families of 30 million Americans.
An ‘Orphan’ disease is another name for a very rare disorder occurring in less than 200,000 individuals in the United States, or less than 5 per 10,000 individuals in the European Union. Most rare diseases are genetic, and thus are present throughout the person's entire life, and are often passed on to other family members. According to a 2008 NORD survey, 68% of patients with a rare disorder took more than 3 months to be diagnosed after the first visit; 36 percent remained undiagnosed after a year, and one in seven patients remain undiagnosed for more than 6 years. Nearly half (42%) of these patients are prevented from working, with 77% reporting that their rare disease has caused them and their family a financial burden.
At ViroPharma, we believe that these patients deserve the same hope for therapeutic options as patients suffering from far more common afflictions. We are an industry leader in developing and commercializing novel drugs to manage diseases in which C1 esterase inhibitor is an important regulatory protein including the Orphan disease known as Hereditary Angioedema, or HAE, a genetic inflammatory disorder affecting over 6,500 people in the U.S.