This is my place to relate my experiences with cancer treatment, as well as share resources that may be helpful to fellow oral, head, and neck cancer survivors. I was diagnosed with adenoid cystic carcinoma of the left parotid on June 30, 2006. My goal is to continue enjoying the Nebraska Good Life. I call this blog the "Cheeky Librarian", since the cancer was discovered in my cheek, I am a librarian, and many that know me say I fit the slang use of the word 'cheeky'.
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:
http://rarediseaseday.us/
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 .
Teri--I missed this one. Sorry, I would have written a post about it as well.
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