Mesothelioma is one of more than 7,000 rare diseases that will be in the spotlight on National Rare Disease Day on February 28th. The National Organization for Rare Disorders (NORD), a consortium of patient organizations, is sponsoring the day to draw attention to mesothelioma and other rare conditions that affect some 30 million Americans.
In the U.S., a disease is defined as rare or ‘orphan’ if it affects fewer than 200,000 Americans at any given time. The Centers for Disease Control estimates that fewer than 3,000 people are diagnosed with mesothelioma each year. Disturbingly, however, the incidence of mesothelioma has risen over the past 20 years in the U.S., and is still rising in Europe.
Malignant mesothelioma is the most aggressive and deadly of the asbestos-related diseases. It effects the membranes (mesothelium) encasing the lungs, heart or abdomen and typically spreads quickly. Because early symptoms can be subtle, mesothelioma is often not diagnosed until the disease has progressed to a point where it is more difficult to treat. Compounding the problem is that mesothelioma is also highly resistant to traditional therapies. While research is ongoing to find effective alternative treatments, mesothelioma, like many rare diseases, receives far less research funding than other more common conditions. As a result, there are not only fewer treatment options, but also fewer experts in the disease.
National Rare Disease Day, an international event held on the last day of February each year, is designed to bring these funding and awareness disparities to the attention of lawmakers and the public, while raising the profile of conditions like mesothelioma. This year’s theme “Rare but Equal” highlights that message. A total of forty-six countries participated in the event last year. This year in the U.S., National Rare Disease Day plans include:
• A “Write Your Rep” campaign to encourage members of Congress to join a new Rare and Neglected Diseases Caucus for discussion of issues related to rare diseases and orphan products.
• Creation of a database of physicians with expertise on specific rare diseases.
• Creation of a “Rare Disease Video Library” of 1 to 2 minute flipcam-style videos made by patients or family members.
More information and events can be found at rarediseaseday.us
Rare Disease Day, US website. Accessed February 15, 2011. rarediseaseday.us
National Organization for Rare Disorders website, Accessed February 15, 2011.
“Mesothelioma: Questions and Answers”, National Cancer Institute.