Rare Disease Day February 29, 2012

rare disease day logo

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases, such as CMT, as a global health challenge. The day is celebrated on the last day of February every year and this year will be observed February 29, 2012.
Anyone can be involved in Rare Disease Day, a grassroots advocacy day.  You can participate in by becoming a Rare Disease Day Ambassador by signing up at:  

rare disease day partner

Then, you will receive email blasts with updates about the day. If you sign up to be an Ambassador, you:

  • Support the theme of the day (that rare diseases are an important public health issue)

  • Agree to promote the day through whatever means you have, such as posting the logo or status updates on your Facebook, Twitter, Blog, or sending emails to your family and friends.

  • Spread awareness and see what a powerful force we can become when we work together

Successes from Rare Disease Day US 2011

  • Connecting via Social Media: Over 11,000 people connected with Rare Disease Day via Facebook, and many shared Patient Stories on the Rare Disease Day website.

  • Research: NIH hosted an all-day conference focusing on research and development of treatments, and other public agencies and private companies held symposiums.

  • Teaching Opportunities:  Teachers and students ranging from high schools to graduate schools found ways to increase awareness through classroom and campus activities focused around Rare Disease Day.

  • National and State Resolutions: The U.S. Senate adopted, by unanimous consent, a resolution designating February 28, 2011, Rare Disease Day across the U.S.  Additionally, proclamations, resolutions and similar documents were issued in all 50 states for the day.

  • Media Coverage: Online coverage of Rare Disease day included articles on Yahoo Health, WebMD, and numerous other websites.  TV and radio coverage included interviews in many cities and on the Dennis Miller show.

Source: http://rarediseaseday.us  retrieved Dec 7, 2011.

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

One Response to Rare Disease Day February 29, 2012

  1. Pingback: RARE DISEASE DAY IS FEBRUARY 29, 2012 | Living Well with CMT (Charcot-Marie-Tooth)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s