Monday, February 28, 2011
Today is Rare Disease Day
The National Organization for Rare Disorders (NORD) is doing its best to get attention to the 30 million Americans that have a rare disease. Speaking as one (Adenoid Cystic Carcinoma is a rare cancer), I tip my hat to their efforts. Here is the website:
One of the goals they have is to create a rare disease physician database, and they would like your help: http://rarediseaseday.us/take-action-now/physician-database/. (Oh, I so hope that they involve a librarian or two in the creation of that critter!) It would be very useful for a newly diagnosed ACC person to have such a database to use to help locate someone familiar with the progression patterns of this cancer, rather than be told by their caregiver that they are cancer-free and have the horrible surprise of its return 5-10-15 years later. (I am pretty lucky that no one has fed me the line of 'cancer-free'.)
You are able to post your story to their Facebook or Twitter site, as well as their video project http://rarediseaseday.us/take-action-now/video-project/ . We might get a few more contacts with some other ACC folks out there through this effort - and any time is a good time when we can link up with others that have this rare disease .