Sunday, February 15, 2009

Rare Disease Day

February 28, 2009 has been declared Rare Disease Day by the National Organization for Rare Diseases (NORD). NORD is coordinating Rare Disease Day in the U.S.
But this is a global effort, as last year,co-ordinated by the European Rare Disease Organization, many European countries also declared this date as Rare Disease Day.

The purpose of the day is to increase awareness of rare diseases as well as the importance of treatment and research.

Did you know that a child smiles 300 about times a day and an adult maybe 15 times?

But imagine if you couldn't smile at all?

Moebius Syndrome is but one example of a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace,blink or move their eyes laterally.)

It must be a devastating disorder for children and parents alike to contend with.

I was lucky enough to be able to benefit from research into breast cancer, an all too common illness. So please, if you can, support Rare Disease Day. Their website is here and this is the Flicker photo stream for the day.

Let's raise the profile of some less well-known illnesses that continue to afflict far too many people around the world, and let them know they are not alone!


Blogger Kay said...

I applaud your resolve and stamina - you do so much for others, you put me to shame Anna. Thank you for alerting me to things I wouldn't otherwise think about.

7:06 am  

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