Posted on January 31, 2023

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, 2023. On this day, the community will come together to raise awareness for the 25-30 million Americans impacted by rare diseases.

Knowledge is powerful. Since 2005, ADAO has been listed as a mesothelioma resource on the NORD website. Most Americans remain unaware that mesothelioma, primarily an asbestos-caused cancer, affects the cells that make up the mesothelium. The disease, which is hard to pronounce and even harder to diagnose, is fatal.

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. Currently, prevention is the only cure.

Dr. Domenica Taruscio, Director at the National Center for Rare Diseases, explains the importance of rare disease day and how it affects mesothelioma, saying,  “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.”

Additionally, NORD shares, The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of raising the profile of the rare disease community at large and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes.”

We hope you’ll join us in honoring those affected by rare diseases, and raising awareness of these diseases so that further deaths and suffering can be prevented. To join the conversation online, use the tags #WhyRare and #RareDiseaseDay on social media. 

Together, we make change happen.

Linda Reinstein

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