What Are You Doing for Rare Disease Day

Alone We are Rare. Together We are Strong.

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year. In 2013, it will be observed on February 28th. Learn more about the History of Rare Disease Day, Past Successes or the Goals and Plans for this year.

Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way! What are you doing for Rare disease Day?

What is a Rare Disease?

In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. Since an estimated 1 out of 2,500 are affected by Charcot-Marie-Tooth disease, CMT falls under the umbrella of rare diseases. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases.

Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.


This entry was posted in Charcot-Marie-Tooth disease and tagged , , . Bookmark the permalink.

2 Responses to What Are You Doing for Rare Disease Day

  1. As part of Rare Disease day we have uploaded a review of the frequently mis-diagnosed disorder: Addison’s Disease. We have actually also created a new video about the illness. Please include us in your blog site list. With thanks


  2. Pingback: More than 4000 rare diseases to come out of the corner | Marcus' s Space

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