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, 2013. 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.
“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 so, while rare, it is a very meaningful disease for those who are affected,” stated Linda Reinstein, ADAO President and Co-founder. 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.
The Asbestos Disease Awareness Organization represents patients and families affected by mesothelioma and other asbestos-related diseases. ADAO remains committed to education, advocacy and community support for patients, families, and those exposed to asbestos throughout the United States and abroad. On March 22-24, 2013, in Washington, D.C. ADAO will host the 9th Annual International Asbestos Awareness Conference, where more than 30 renowned experts and asbestos victims from five countries will present the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-caused diseases.
World Rare Disease Day was launched in Europe four 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.” According to the organization’s press release, this year, “the observance has special significance in the U.S. because [it is] the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.”
Join ADAO by uploading your ‘Raise Your Hands’ photo on to http://www.rarediseaseday.org/article/joining-hands-around-world.
Every year Rare Disease Day has a specific theme worldwide. This year, the theme is “Rare Disorders Without Borders.” For more information about Rare Disease Day activities in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org.
Since 2005, the Asbestos Disease Awareness Organization has been listed as a mesothelioma resource on the NORD website.
Linda Reinstein’s Social Networks
ADAO’s Social Networks