Friday, February 27, 2009

International Rare Disease Day

Rare Disease Day 2009


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/]

2 comments:

Cyndi Sloop said...

Teresa,

Well, it's interesting that ACC might have its own day. If the US were to adopt this day also, it would be a day (starting point) we could use to possibly bring more knowledge to the public or hold fund raisers? My daughter wondered if ACC had a walk, she wanted to participate, I told her none that I knew of at this time. I'm thankful that the interenet is a source that allows all of us around the world to share with one another. Thanks for the info.

Sincerely,
Cyndi

Cyndi Sloop said...

Teresa,

Well, it's interesting that ACC might have its own day. If the US were to adopt this day also, it would be a day (starting point) we could use to possibly bring more knowledge to the public or hold fund raisers? My daughter wondered if ACC had a walk, she wanted to participate, I told her none that I knew of at this time. I'm thankful that the interenet is a source that allows all of us around the world to share with one another. Thanks for the info.

Sincerely,
Cyndi

 
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