Happy International Rare Disease Day!!!

shilala · 02-28-2011, 09:51 AM

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.

CigarNut · 02-28-2011, 10:57 AM

I'm really happy that I don't have any rare diseases!

icehog3 · 02-28-2011, 11:08 AM

Clicked the link, Scott, every little bit helps.

I am guessing my syphillis isn't considered rare.

ninjavanish · 02-28-2011, 11:12 AM

Quote:

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.

MedicCook · 02-28-2011, 11:15 AM

I raised my hand Scott.

icehog3 · 02-28-2011, 11:35 AM

Quote:

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.

Gophernut · 02-28-2011, 12:01 PM

Quote:

Originally Posted by MedicCook

I raised my hand Scott.

Me too!

CasaDooley · 02-28-2011, 01:50 PM

Done deal Bro!

shilala · 02-28-2011, 03:36 PM

Quote:

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.

LeoM · 02-28-2011, 03:47 PM

Clicked the link brother

02-28-2011, 03:57 PM

Clicked it.

icehog3 · 02-28-2011, 04:09 PM

Quote:

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!!

HollywoodQue · 02-28-2011, 05:26 PM

I just clicked also

kelmac07 · 02-28-2011, 06:08 PM

<--------Raised his hand!!

shilala · 02-28-2011, 06:22 PM

Quote:

Originally Posted by icehog3

Winner!!

That made me lol for real.

icehog3 · 02-28-2011, 06:54 PM

Quote:

Originally Posted by shilala

That made me lol for real.

Be here all za veek. Try the veal.

shilala · 02-28-2011, 07:11 PM

Quote:

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.

MedicCook · 02-28-2011, 10:58 PM

Does being a ginger count?

chachee52 · 03-01-2011, 06:41 AM

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!!

02-28-2011, 09:51 AM	#1
shilala Dear Lord, Thank You. Join Date: Oct 2008 First Name: Scott Posts: 13,721 Trading: (252)	Happy International Rare Disease Day!!! 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. __________________

02-28-2011, 10:57 AM	#2
CigarNut Fck Cancer! Join Date: Jan 2009 First Name: Michael Location: Clermont, Florida Posts: 18,042 Trading: (111*)	Re: Happy International Rare Disease Day!!! I'm really happy that I don't have any rare diseases! __________________ Need Beads? Need Five Finger Bags? 2 of 3 Requirements for use of the CA Rolodex: 100 posts/ 60 day membership/ participation in trade (trader rating). New members can be added at any time.

02-28-2011, 11:08 AM	#3
icehog3 Admiral Douchebag Join Date: Oct 2008 First Name: Tom Location: Clermont, Kentucky Posts: 71,440 Trading: (60)	Re: Happy International Rare Disease Day!!! Clicked the link, Scott, every little bit helps. I am guessing my syphillis isn't considered rare. __________________ Thanks Dave, Julian, James, Kelly, Peter, Gerry, Dave, Mo, Frank, Týr and Mr. Mark!

02-28-2011, 11:15 AM	#5
MedicCook Mila smoked my cigar Join Date: Jan 2009 First Name: Ryan Location: Schaghticoke, NY Posts: 10,946 Trading: (7)	Re: Happy International Rare Disease Day!!! I raised my hand Scott. __________________ 27 World Series Championship's "If your wife doesn't like the aroma of your cigar, change your wife.", Zino Davidoff

02-28-2011, 01:50 PM	#8
CasaDooley Herf Crew of 2 Join Date: Oct 2008 First Name: Kevin Location: The birthplace of Fathers Day Posts: 2,465 Trading: (41)	Re: Happy International Rare Disease Day!!! Done deal Bro! __________________ *Founding member of the Lilac City Dedicated Herfers*

02-28-2011, 03:47 PM	#10
LeoM "Say what again!" Join Date: Jan 2009 First Name: Leo Location: Passed out under an Agave Posts: 690 Trading: (87)	Re: Happy International Rare Disease Day!!! Clicked the link brother __________________ Did you know Smurfs are only three apples tall?

02-28-2011, 03:57 PM	#11
mariogolbee Guest Posts: n/a	Re: Happy International Rare Disease Day!!! Clicked it.

02-28-2011, 05:26 PM	#13
HollywoodQue Invictus Join Date: Oct 2010 First Name: Howard Location: In the "D" Posts: 3,123 Trading: (46)	Re: Happy International Rare Disease Day!!! I just clicked also

02-28-2011, 06:08 PM	#14
kelmac07 Resident Maduro Whore!! Join Date: Apr 2009 First Name: Mac Location: Newport News, VA Posts: 27,322 Trading: (218)	Re: Happy International Rare Disease Day!!! <--------Raised his hand!! __________________ Dom in the MLB thread "I could probably get you to wear a Yankee hat for a Maduro!"

02-28-2011, 10:58 PM	#18
MedicCook Mila smoked my cigar Join Date: Jan 2009 First Name: Ryan Location: Schaghticoke, NY Posts: 10,946 Trading: (7)	Re: Happy International Rare Disease Day!!! Does being a ginger count? __________________ 27 World Series Championship's "If your wife doesn't like the aroma of your cigar, change your wife.", Zino Davidoff

03-01-2011, 06:41 AM	#19
chachee52 Adjusting to the Life Join Date: Dec 2009 First Name: Todd Location: Tyngsboro, MA Posts: 399 Trading: (2)	Re: Happy International Rare Disease Day!!! 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!! __________________