Rare Disease Day 2014

Rare Disease Day Logo

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 and this year will be observed February 28, 2014.

In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. 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.

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.

We want you to participate in Rare Disease Day. Here are a few things you can do:

Handprints Across America - Print out the Rare Disease Day logo, take a photo of yourself holding it, and submit it:

Share your story - take this opportunity to write about your experience or a loved one's experience with a rare disease. Add in some images and send it to us.

You can also easily take your story to the media with NORD's Rare Disease Day Press Kit: http://rarediseaseday.us/take-action-now/press-kit/

Talk about the importance of Rare Disease Day at school:

Join our Facebook page or the CurePSP Forum to share photos and talk about your loved ones.