Share Your Story for Rare Disease Day!
Alert from the National Organization for Rare Disorders

Please consider joining NORD in any of the following initiatives for Rare Disease Day 2010:

Share Your Story 
NORD is collecting stories from patients and families that we may have opportunities to share with the media or publish through our own website or publications. We can’t guarantee that your story will be used, but we often get requests from the media for patient stories, especially around Rare Disease Day.  Stories can be anywhere from 100 to 500 words. You can email them to rarediseaseday@rarediseases.org. If you have a photo to go with your story, please include it with your email.

The following is one example of possible results. Such stories help raise awareness of specific diseases and understanding of the challenges faced by patients and families. 

The Faces of Rare Disease Day 
Cindy L. Abbott has a big dream and—she fears—limited time to make it happen. The health sciences lecturer at Cal State Fullerton wants to climb Mount Everest but has a serious progressive disease known as Wegener’s granulomatosis. Abbott first became aware of her medical problem when she lost the vision in her left eye. Now, she lives with the knowledge that her disease could put an end to her ability to do the things she loves, which include mountaineering and scuba-diving. She wants to accomplish her dream of climbing Everest before that happens. She also wants to raise awareness of Wegener’s granulomatosis and support research through the Vasculitis Foundation.  To do this, she has teamed up with NORD to promote Rare Disease Day and related activities. Read her story. Visit her blog.   
 
Help Us Create A Physician Database 
NORD receives many requests for help from patients and their families.  One of the most-requested services is referral to a physician or medical center with experience in treating specific rare diseases. As a Rare Disease Day project that will help patients and families throughout the year, we would like to create a database of physicians (both clinicians and researchers) and medical centers with expertise on various rare diseases.

You can recommend physicians for this database on the Rare Disease Day U.S. website (www.rarediseaseday.us).  Submit names and contact information here.  NORD will contact them to see if they wish to be included.  The database won’t be published on a public website, but will be used to help physicians and patients make contact with each other.   
 
Nominate Your Favorite Researcher to the Hall of Fame 
NORD created a Research Hall of Fame for Rare Disease Day 2009.  We hope to expand it this year with many more stories and photos illustrating the work of rare disease researchers and illuminating the special qualities of these extraordinary scientists. To nominate your favorite researcher, send a short (200-300 words) essay with a photo to rarediseaseday@rarediseases.org.

January 6, 2010