Rare Disease Day is an annual event observed worldwide on the last day of February each year. The purpose of this day is to raise awareness of rare diseases as a public health issue.
In the U.S., a rare disease is defined as affecting fewer than 200,000 people. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.
The population of Raynaud’s sufferers is too large to be considered a rare disease: As a group, we’re as large as all patients sufferering from rare diseases combined. But a portion of Raynaud’s patients also suffer from rare diseases such as Scleroderma and SjÃ¶gren’s Syndrome. More importantly, Raynaud’s sufferers share a common experience with these medical groups: We struggle to get a proper diagnosis, find information, and get treatment. Big as we are as a group, just like those with rare diseases, our cause receives little medical research attention.
For 2010, the focus of Rare Disease Day is on the unique partnership between patients and researchers seeking to develop new diagnostics and treatments. We join with our partners around the world seeking answers that will help those of us with little known, and less researched diseases gain the attention we deserve.
What can you do to make an impact? Send a Letter to the Editor of your local paper, write your Governor, or send in your story to the Rare Disease Day Team at firstname.lastname@example.org. For sample letters or to learn more go to the Rare Disease Day Web Site.