International Rare Disease Day

Adenoid Cystic Carcinoma just might have its day today - February 28th has been set by the European Organisation for Rare Diseases [http://www.eurordis.org ]and a coalition of other health and rare disease organizations to bring attention to rare diseases: http://www.rarediseaseday.org/

On the site under "What is a Rare Disease", I think this description fits what ACC patients face (or at least this patient has faced several of the points):
"Rare disease patients face common problems:
- Lack of access to correct diagnosis
- Delay in diagnosis
- Lack of quality information on the disease
- Lack of scientific knowledge of the disease
- Heavy social consequences for patients
- Lack of appropriate quality healthcare
- Inequities and difficulties in access to treatment and care"

They have a section on the site where you can tell your story through videos or photos:
http://www.rarediseaseday.org/yourstory .

I checked the Eurodis site - didn't find anything on Adenoid Cystic Carcinoma - but it isn't that type of site. They link to other sites that do have information on ACC, such as NORD [http://www.rarediseases.org/]