Rare Disease Day February 28, 2011
Monday, February 28th, 2011
Goals and Plans with the National Organization for Rare Disorders (NORD)
This is the third annual observance of Rare Disease Day U.S. This year’s theme is “Rare but Equal” which will highlight “Rare Diseases and Health Inequalities.” The growth of this campaign in just a few short years has been remarkable, but we look to everyone to continue that momentum to make this year’s celebration the most successful yet. Throughout the Rare Disease Day website, you will find many ways you can get involved. Big picture goals this year include:
- Creating a video encyclopedia of rare diseases
- Extensive media coverage
- Social networking blitz
- Creating a Rare Disease Physician Database
- Sharing patient stories, videos, photos, and blogs
- Joining hands with others worldwide
Rare Disease Day is sponsored by NORD, and they have launched The New Rarediseaseday.us Website.
What can you do as an individual to increase awareness about Tarlov cysts?
Share your story. Send your story or a video to share with NORD.
- Let the Newspapers & TV stations in your area know about Rare Disease Day and Tarlov cysts (call or write us for a press release)
- Contact your mayor, congressman, or governor and request a Proclamation for Rare Disease Day in your city or state
- Share it with your friends in your social network
- Join together with others in your state. Let us know if you are willing to have your name shared in the database of patients from your state for future networking
Alone we are “rare”; TOGETHER we are strong!