Posted on February 27, 2014
The Asbestos Disease Awareness Organization (ADAO), which combines education, advocacy, and community to provide a unified voice for asbestos victims, will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing Rare Disease Day on February 28, 2014. On this day, thousands of patients and their families will share their stories and focus a spotlight on rare diseases as an important global public health concern. Since 2005, ADAO has been listed as a mesothelioma resource on the NORD website.
“A ‘rare disease’ is one that affects fewer than 200,000 Americans. Tragically, mesothelioma, a cancer caused from asbestos, claims the lives of more than 3,000 Americans every year,” stated Linda Reinstein, ADAO President and Co-founder. “Symptoms of mesothelioma may not appear until up to 50 years after initial exposure to asbestos. 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. Presently, prevention is the only cure.”
Every year Rare Disease Day has a specific theme worldwide. This year, the theme is “Join Together for Better Care.” World Rare Disease Day was launched in Europe six years ago and last year was observed in 60 nations. It is always observed on the last day of February. On that day, patients and patient organizations will post stories, videos, and blogs online and host events to raise awareness of these diseases, which are often called “orphans.”
ADAO represents patients and families affected by mesothelioma and other asbestos-related diseases throughout the United States and abroad. On April 4- 6, 2014, in Washington, D.C. ADAO will host the 10th Annual International Asbestos Awareness Conference, where more than 30 renowned experts and asbestos victims from ten countries will present the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-caused diseases.
Together, change is possible.