For the first time, the United States will participate in the second annual Rare Disease Day on February 28th. The day, observed by countries around the world, takes notice of about 6,000 rare diseases – including malignant mesothelioma cancer. This year’s event is entitled, “Patient Care: A Public Affair.”
The goal of Rare Disease Day is to raise awareness of rare diseases among government officials and the public. The event was organized by the European Organisation for Rare Diseases (EURORDIS) and its 19- member Rare Disease National Alliance, which represent over 600 patient groups across Europe. The struggles associated with rare diseases include diagnosis delay, misdiagnosis, physical burdens and a lack of practical support. This event works to show the impact on patient’s lives as well as help to expand research and treatments.
The National Organization for Rare Diseases (NORD) is responsible for bringing the event to the U.S. NORD helps to draw attention to rare illnesses such as malignant mesothelioma. NORD specifically worked to pass the Orphan Drug Act, which encourages drug companies to research and developed drugs and treatments for rare diseases using tax incentives and other benefits. For the first time, Rare Disease Day will also be celebrated in Panama, Australia, Columbia, Argentina and China.
Mesothelioma, a rare form of cancer that most often occurs in the lining of the lungs - but may also be found in the lining of the heart or abdomen in very few cases - is caused by exposure to asbestos. Approximately 2,000 new cases of mesothelioma are diagnosed in the United States each year. Other rare diseases caused by asbestos include asbestosis, a chronic lung aliment, as well as other cancers.
Asbestos, a group of naturally occurring minerals, can be found in an assortment of products including; cement, flooring products, textiles and insulation. Today, the U.S. Occupational Safety and Health Administration sets limits for acceptable levels of exposure in the workplace and requires workers to use protective equipment around asbestos.
Mesothelioma is difficult to diagnose because the symptoms are similar to many other conditions and can take twenty to fifty years to appear. By the time the disease is diagnosed, it is often incurable. Depending on the location of the cancer, the stage, and the overall health of the patient, standard treatments usually include surgery, radiation and chemotherapy. Still, more research is needed to create new and better treatments in the future.
Each year, Rare Disease Day is celebrated on the last day of February. For more information about Rare Disease Day, please contact www.rarediseaseday.org or the National Organization for Rare Diseases at www.rarediseases.org.
For further information about mesothelioma cancer, please visit the Mesothelioma and Asbestos Awareness Center website: www.maacenter.org.
Sources:
www.rarediseaseday.org
www.rarediseases.org
