Posted on February 27, 2015

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, 2015. 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. As the NORD supporters say, “no more Band Aids-just a cure!” Since 2005, ADAO has been listed as a mesothelioma resource on the  NORD website.  The European Council states:  “1 in 17 people will be affected by a rare disease at some point in their life.”

2015 rare disease day

By definition, 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, 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.

Dr. Domenica Taruscio, Director, National Center for Rare Diseases, explains the importance of rare disease day and how it affects mesothelioma: “Mesothelioma has a well-identified environmental cause – asbestos. Yet, much research is still needed, in particular concerning early diagnosis and treatment. There is so much that can be done in order to prevent mesothelioma simply applying the current knowledge, deleting asbestos exposure from our everyday lives by appropriate regulations.However, to achieve these aims, a widespread awareness is needed. Thus, the mesothelioma issue is expected to benefit from the awareness raising stirred up by the Rare Disease Day.”

Every year Rare Disease Day has a specific theme worldwide. This year, the theme is “Living with a Rare Disease.”  World Rare Disease Day was launched in Europe seven 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 unites patients and families affected by mesothelioma and other asbestos-related diseases throughout the United States and abroad. On April 17- 19, 2015, in Washington, D.C. ADAO will host the 11th Annual International Asbestos Awareness Conference, where nearly 40 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.

For more information about Rare Disease Day activities in the U.S., go to

Together, change is possible.

Linda Reinstein

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