To draw your attention to 28th Feburary 2014 being rare disease day? or in asking you to join in the thunderclap?

[KarenBrockman]

www.rarediseaseday.org/article/what-is-rare-disease-day

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My family have a rare genetic disease. It was only discovered in the last 10 years, yet i know my mum, sister, ds and probably my nan born in 1912 had it and most likely generations before that.

Apparently around 7000 people worldwide have my condition, does that make it rare?

I guess so Candy

www.huffingtonpost.co.uk/natasha-lipman/rare-diseases-day_b_4858076.html

My DDs school & nursery are doing Jeans for Genes today.

EDS Canada's request that the
CN tower be lit BLUE in honour Rare Disease Day has been approved!
As such, the CN Tower will be lit BLUE from sunset to sunrise tomorrow, Friday February 28th 2014. Please join us in celebrating Rare Disease Day and the Global Gene Project tomorrow evening when you see the tower either in person or via media.
www.rarediseaseday.org/event/canada/456

Is EDS counted as rare? Thought it was fairly common.

EDS affect 1 in 5000 people, according to nhs uk. I think for a condition to be considered rare, it is supposed to affect no fewer than 1 in 2000 people.

There was a good segment about it on Womans Hour this morning featuring a family with two Duchenne's boys.