Take Action For Rare Disease Day!

This will only take a few minutes to get your voice heard!

Today, February 29, 2012, is Rare Disease Day. I just took action to raise awareness in the United States about people with rare diseases!

Please take a few minutes and let your elected officials know that you also care about people with rare diseases and wish them a bright future! Visit this link, type in your zip code and a list of your legislatures will appear. Edit letter and email/mail. Easy!!!


I have CMT and am spreading the word about World Rare Disease Day Feb. 29, 2012. Charcot Marie Tooth Neuromuscular Syndrome is considered a Rare Disease affecting 1 out of 2, 500 persons and 6 million people worldwide. CMT is but one of 6,000 to 8,000 Rare Diseases on our planet. 75% of these diseases affect children. 80% of these Rare Diseases are genetic in origin.

Most rare diseases, like Charcot Marie Tooth Syndrome, have no cure, so the art of living with a rare disease is an ongoing learning experience for affected persons and families.