February 29, 2012 is Rare Disease Day, 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.
One way almost anyone can help raise awareness for Rare Disease Day, is to Write Your Reps in Congress to help teach them about rare diseases. The more informed our legislators are about rare diseases and the millions of Americans living with them, the better they will be able to act on issues we all care about.