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General Discussion>Happy International Rare Disease Day!!!
shilala 08:51 AM 02-28-2011
It really is, I'm not kidding.
Last year NORD raised $10,000 for Stiffman Syndrome. I was misdiagnosed with Stiffman a couple years ago until they ultimately diagnosed me with Isaac's Syndrome. The two are real close, I think I got the better of the two deals.
Anyways...
If you'll go to this page and click in the "Raise Your Hand" box on the right, Lundbeck Inc. will donate a buck for research toward Rare Diseases.

The kind of things NORD deals with are diseases that get very little attention. There's no money in them. It doesn't pay to gather all the data and info and the human tests/trials are very, very limited because of the lack of funding from any direction, so something as small (in medical research terms) as a $10,000 donation can go a long, long way.
In the last 10 years, a lot of treatments have come about because of NORD's involvement. One NORD-connected messageboard I frequent has gathered enough information on symptoms from Isaac's patients all over the world that it's helped spread and create new treatments.
Information that I've gathered there has helped me to form an argument for a drug therapy I'm using right now. I am literally the only Isaac's patient in the world using this drug, and it's working great.

All that was just to say...
When you click the "Make a Difference" button, it really does. :-)
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CigarNut 09:57 AM 02-28-2011
I'm really happy that I don't have any rare diseases!
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icehog3 10:08 AM 02-28-2011
Clicked the link, Scott, every little bit helps. :-)

I am guessing my syphillis isn't considered rare.
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ninjavanish 10:12 AM 02-28-2011
Originally Posted by icehog3:
Clicked the link, Scott, every little bit helps. :-)

I am guessing my syphillis isn't considered rare.
Well, I think a verneral disease implies that you have had to "Shack-up"... in which case, I'm not sure that a douchebag such as yourself does that often or not... so perhaps it is rare Tom. How often would you say this activity occurs? Haha

Just teasin'. :-):-)

Linked and done. Good luck to all with rare diseases. I'm fortunate to only have one rare disease and it's hereditary... it's called plurrhea... it's only symptom is that everything I eat turns to poo. So it's quite managable.
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MedicCook 10:15 AM 02-28-2011
I raised my hand Scott. :-)
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icehog3 10:35 AM 02-28-2011
Originally Posted by ninjavanish:
Well, I think a verneral disease implies that you have had to "Shack-up"... in which case, I'm not sure that a douchebag such as yourself does that often or not... so perhaps it is rare Tom. How often would you say this activity occurs? Haha
I do alright. :-) :-)
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Gophernut 11:01 AM 02-28-2011
Originally Posted by MedicCook:
I raised my hand Scott. :-)
:-) Me too!
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CasaDooley 12:50 PM 02-28-2011
Done deal Bro!:-)
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shilala 02:36 PM 02-28-2011
Originally Posted by icehog3:
Clicked the link, Scott, every little bit helps. :-)

I am guessing my syphillis isn't considered rare.
When you calculate the odds of contraction against the frequency in which you're likely to get some scratchin', I'd go ahead and put it in the rare category, my brother. :-)
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LeoM 02:47 PM 02-28-2011
Clicked the link brother :-)
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mariogolbee 02:57 PM 02-28-2011
Clicked it.
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icehog3 03:09 PM 02-28-2011
Originally Posted by shilala:
When you calculate the odds of contraction against the frequency in which you're likely to get some scratchin', I'd go ahead and put it in the rare category, my brother. :-)
Winner!! :-) :-)
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HollywoodQue 04:26 PM 02-28-2011
I just clicked also
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kelmac07 05:08 PM 02-28-2011
<--------Raised his hand!!
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shilala 05:22 PM 02-28-2011
Originally Posted by icehog3:
Winner!! :-) :-)
That made me lol for real.
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icehog3 05:54 PM 02-28-2011
Originally Posted by shilala:
That made me lol for real.
Be here all za veek. Try the veal. :-)
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shilala 06:11 PM 02-28-2011
Originally Posted by CigarNut:
I'm really happy that I don't have any rare diseases!
Maybe you're not trying hard enough, Michael. Build a house underneath powerlines or something. :-)
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MedicCook 09:58 PM 02-28-2011
Does being a ginger count?
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chachee52 05:41 AM 03-01-2011
Wow, I missed a day for myself? Since 2003 I was diagnosed with a "rare" disease in my knee called BPVNS. Basically my knee joint capsle was being attacked with nodules and my knee was as big as a cantalope (not really exagerating). In Nov 09 I finally decided to have the surgery. They found that it wasn't BPVNS, instead it was a rare form of a tumor what only about 50 cases have ever been reported.
Clicked and done!!
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