Rare Disease Day

On February 28, 2009, millions of people around the world will be observing the second annual Rare Disease Day.

In the United States, a disease is considered rare if it affects fewer than 200,000 people. Some rare diseases, such as Lou Gehrig's disease (ALS), are well known to the public. Others, like Charcot-Marie-Tooth disease (CMT), are not, and you can imagine the loneliness of having a disease that most people have never heard of, that has no effective treatment or cure, and for which medical research is seriously underfunded.

Affecting one of every 2,500 Americans, CMT is the most commonly inherited peripheral neuropathy, with symptoms ranging from moderately incapacitating to severely disabling, yet many people have never heard of it and many medical professionals have little or no experience diagnosing or managing it.

The Charcot-Marie-Tooth Association (www.cmtausa.org), the only national organization solely devoted to educating patients and physicians about CMT and funding research to find treatments and a cure, has just implemented an accelerated research initiative (STAR) that has the potential of finding effective treatments for the most common forms of CMT within three to five years.

To learn more about the CMTA STAR program and how this groundbreaking research may change the lives of tens of thousands of people, please visit www.cmtastar.org/info.