Organizations dedicated to raising awareness about the dangers of asbestos and providing a voice for people with mesothelioma are joining in today’s recognition of “Rare Disease Day.” Mesothelioma is a rare form of cancer related to asbestos exposure. It usually affects the lining of the lungs (pleural mesothelioma) or abdomen (peritoneal mesothelioma), but may also sometimes affect the heart (pericardial mesothelioma). Rare Disease Day is a program of the National Organization for Rare Disorders (NORD).
According to its website, NORD is “dedicated to helping the nearly 30 million American with rare diseases, and the organizations that serve them, through programs of education, advocacy, research and patient services.” Among the statistics available on the NORD website is information that in the U.S. a disease is considered “rare” if it is believed to affect less than 200,000 Americans. There are approximately 6,800 “rare” diseases cataloged by the National Institutes of Health. NORD offers a searchable database or rare diseases to help people who may be looking for answers.
Rare Disease Day was established in Europe in 2008 by NORD’s European partner, EURORDIS, and is celebrated worldwide each year on the last day of February. The theme for Rare Disease Day 2012 is Solidarity, “reaffirming the idea that people affected by rare diseases are ‘Rare But Strong Together,’” according to NORD. More information is available at the international Rare Disease Day website, www.rarediseaseday.org.
Among those organizations supporting Rare Disease Day is the Asbestos Disease Awareness Organization (ADAO), which advocates for the eradication of asbestos, and represents patients and families affected by mesothelioma and other asbestos-related diseases.
In a statement, Linda Reinstein, ADAO President and Co-Founder, says, “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.”
The ADAO is encouraging those touched by mesothelioma and other asbestos-related diseases to participate in Rare Disease Day by uploading a “Raise your hands” themed photo on the official website. Participants will have an opportunity to share where in the world the photo was taken, and a personal message about the rare disease that has affected their life. ADAO also is promoting awareness on its Facebook page and to its followers on Twitter (@Linda_ADAO).
The Mesothelioma Applied Research Foundation (Meso Foundation) also is supporting Rare Disease Day. You can visit the organization’s Facebook group for more information about their activities and to find out more about how to get involved.
The Rare Disease Day logo is a non-commercial symbol of global partnership in the search for ways of improving the lives of those affected by rare diseases.
