Image description: cat sitting on a trabasack bean bag lap tray bag
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Rare Disease Day
My son has Dravet Syndrome. This is Joe (image description) in the Tardis at the Dr Who Experience, Cardiff.
“Dravet Syndrome is a rare neurological condition causing severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems.”
Dravet Syndrome is thankfully very rare, affecting around 1:29,000 to 1:40,000 births in the UK. This means it is often unheard of and the same goes for many other rare conditions.
But if we put all the rare diseases together, somewhere in the region of 30 million people across Europe are affected by a rare disease.
Rare Disease Day has been held annually since 2008 across the world, on 29th February, itself a rare date, or on 28th February in non-leap years. It is a day to raise awareness among the public and the professional community through a range of events and activities.
To raise awareness, you don’t need to do much – just like or reblog this page.
If you have a Rare Disease post you want me to reblog, message me with a link. I have 6000+ followers
Find out more about Rare Disease Day here:
Find out more about Dravet Syndrome here http://ift.tt/1OvF51L
Joe also has a trabasack
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It’s called the Infinadeck, a true omni-directional treadmill designed for Virtual Reality gaming.
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she’s in for quite the surprise later
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““Beautiful things grow out of shit. Nobody ever believes that. Everyone thinks that Beethoven had…”
““Beautiful things grow out of shit. Nobody ever believes that. Everyone thinks that Beethoven…
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Over and over I hear people talk about certain products as though they shouldn’t exist, the ads for these items, are silly, I’ll admit, but the response is almost always aggressively “That is the laziest thing I’ve ever seen!!”, “I’ve lost my faith in humanity!” But if you really consider who could actually use these items, you’d see that are they not only unjustly called “lazy” but there are people in the world whose lives are made better by these products, who benefit from their existence!
New videos Monday-Friday! #WithCaptions Subscribe!
[Image description: A video still of a person with blonde hair wearing a Harry Potter snuggie and lying in bed. This video is captioned.]
What a great and super important video. Annie highlights some really neat accessibility equipment, too, so be sure to take a look. And the next time someone calls out a snuggie, you can throw this in their face 😉
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Hello sexy, how are you?
Good. Sit on the comfy sofa, I have an idea I want to share…
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