Posted on February 26, 2018
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, 2018. 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.” 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, and symptoms of mesothelioma may not appear until up to 50 years after initial exposure to asbestos. 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.”
This year the 2018 global theme, “Research,” recognizes how research brings hope to people living with rare diseases. World Rare Disease Day was launched in Europe nine years ago and last year was observed in almost 100 countries and regions. 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 rare diseases, which are often called “orphans.”
This year is already full of action to protect children and families from rare diseases. Just last month, ADAO was delighted to join Less Cancer supporters at the National Cancer Prevention Day conference to discuss the threats that asbestos still pose to every day Americans.
ADAO unites patients and families affected by mesothelioma and other asbestos-related diseases throughout the United States and abroad. On April 13-15, 2018, ADAO will host the 14th Annual International Asbestos Awareness and Prevention Conference, where nearly 30 renowned experts from nine countries will present the latest advancements in disease prevention, global advocacy, and treatment for mesothelioma and other asbestos-caused diseases. Register Today!
Together, we make change happen.
Linda Reinstein