Rare Disease Day began in 2008 in an effort to raise awareness with the general public and policy makers about the serious impact that lesser-known diseases have on patients and their families. The organization that started Rare Disease Day, the European Organization for Rare Diseases, wanted to help people understand that awareness and treatment for rare diseases are inadequate, and those who suffer can feel isolated.
Many other organizations around the world agreed, and joined the effort. In 2009, advocacy groups in the U.S., Australia, Latin America, China, and Taiwan began coordinating activities to promote the day through media coverage and thousands of events worldwide. Since then, participation has grown to include over 70 countries. In 2013, President Barack Obama provided a letter proclaiming his support.
Rare Disease Day 2014
This year, Rare Disease Day is being held on February 28. Its theme, “Join Together for Better Care,” is intended to bring together people and organizations with knowledge and resources as an effective way to deepen awareness and focus on improving the care that patients with rare diseases receive.
What Is a Rare Disease?
According to the National Organization for Rare Disorders (NORD), any disease affecting less than 200,000 Americans is considered rare. Currently, there are around 7,000 such diseases affecting close to 30 million Americans.
Mesothelioma: A Rare, Asbestos-Related Cancer
One example of a rare disease is mesothelioma, an aggressive and incurable cancer that is directly caused by asbestos exposure. Each year, 3,200 people in the United States are diagnosed with mesothelioma. The disease is devastating for victims and their families — physically, emotionally, and financially. Mesothelioma is not hereditary. It is caused by environmental factors (asbestos exposure). Sadly, mesothelioma victims’ exposure to asbestos could have been avoided — if only the makers of asbestos-containing products had made the public aware of the associated risks.
Get Involved in Rare Disease Day
If you or someone you love is suffering from mesothelioma or another rare disease, there are many ways you can join today’s global Rare Disease Day efforts. In just a few clicks you can join the community, show your support, and help raise awareness so that 2014 is the biggest Rare Disease Day yet.