February 29 - Worldwide Rare Disease Day

Happy Rare Disease Day! Those of us with an Interstitial Lung Disease (ILD) are members of this group - a Rare Disease. I love that it is celebrated on such a rare day - leap year.

I copied this from the Rare Disease 2012 Web Site:

Welcome to Rare Disease Day in the USA!

More than 600 patient organizations, government agencies, educational institutions, clinical centers, and companies have signed on as Rare Disease Day Partners in the U.S., which means they support the global theme and goals of Rare Disease Day.   View the list of U.S. Rare Disease Day Partners on the Rare Disease Day US site (www.rarediseaseday.us).

NORD and the U.S. Rare Disease Day Partners are happy to be working with EURORDIS and friends around the world in support of this very important initiative.  Plans for Rare Disease Day 2012 in the U.S. include the following exciting events:

• a National Institutes of Health day-long symposium on February 29
• a Food and Drug Administration Rare Disease Patient Advocacy Day on March 1

Other plans, for which tools and resources are provided on the Rare Disease Day US website, include the following:

• a "Handprints Across America" campaign in which everyone is encouraged to submit photos of themselves with the Rare Disease Day logo for our photo gallery
• a "Visions of Solidarity" campaign in which individuals can describe, in artwork or words, what "Solidarity" -- the global theme for 2012 -- means to them
• suggestions for teachers to bring Rare Disease Day to the classroom, including a 1 to 3 day curriculum for high school biology or health teachers to use
• a media awareness campaign for which a press kit has been posted on the Rare Disease Day US website
• a countdown to Rare Disease Day with a badge for supporters to post on their websites

NORD salutes EURORDIS for its leadership in establishing Rare Disease Day.  We are happy to join the global rare disease community in supporting this important awareness initiative!  As our Partners in the U.S. post news on the U.S. website about planned activities, we'll also share it here.  On this 5th global anniversary, and on the ultimate "rare day" -- February 29th -- we celebrate the solidarity of patients and families affected by rare diseases, as well as of those seeking to improve their lives, around the world!