Let's raise awareness for Rare Disease Day!

Rare Disease Day is an annual awareness-raising event established by the European Rare Disease Organization (EURORDIS) at the international level and the National Organization for Rare Diseases (NORD) at the national level. Rare Disease Day is observed on the last day of February.

As a member of the Histiocytosis Association, we are asking that you help raise awareness for our orphan disease on Rare Disease Day, February 28, 2010.

Here are a few helpful ideas for promoting awareness of rare diseases in your community:

• Enter the Rare Disease Day Contest by submitting your rare disease story in the form of a video or photo.
  
• Ask your governor to proclaim February 28, 2010 Rare Disease Day in your state. NORD has provided a sample proclamation and governor’s letter.
  
• You can use this Rare Disease Day press kit with your media contacts to raise awareness of the histiocytic disorder(s) closest to your heart.
  
• If you are on Facebook, become a FAN of ‘World Rare Disease Day Feb 28 2010’, and ask your friends to be FAN’s also.
  
• Wear your HAA T-Shirt on February 28, 2010.
  

These are just a few of the many ways in which you can join the effort to raise awareness for the histiocytic disorders on Rare Disease Day, February 28, 2010.

You can learn more about Rare Disease Day at the national level by visiting www.rarediseaseday.us or on a global level by visiting www.rarediseaseday.org.

If you would like to share your success or ideas for ways in which HAA members can help raise awareness for the histiocytic disorders and Rare Disease Day, please submit them here.

Sarah suggests...
"Balloon release (We along with many families on facebook are participating in a balloon release on 2 28 10 to raise awareness)"

Maria shares her good news...
"Using the media kit that the HAA sent in the email on Wednesday, I wrote to the editor of the Columbus Dispatch in Columbus, OH and they just called me to let me know that they will be publishing the letter in the Sunday paper."