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Re: Lupus

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Hi Diane,

By now you may have been deluged with help (from our very helpful people).

There is an excellent resource on virtually all diseases, which includes

detailed information on both conventional and experimental treatments, as

well as much more, including organizations. Unfortunately, it is just not

that accessible from the net (they say they will send you hard copy

printouts, but it doesn't happen) But-- it is very accessible from

Compuserve! The National Organization for Rare Diseases (NORD, Go NORD on

Compuserve) will give you an excellent starting place. It probably won't

give you the friendly web sites you are seeking tho.

If anyone has a Compuserve subscription, It would be thoughtful to capture

the NORD info & send it to Diane. It would also help me in setting up a

'faq'.

There may be a site on the web that has a subscription to NORD, & if there

is, I would like to know of it. Their direct web services where not too

good when last I tried, but from Compuserve its free & full text. I have

shown their printouts to several MDs, & found lots of information they were

not aware of included.

Ken

At 01:23 PM 5/14/98 +0000, you wrote:

>

>

>Hi Gang! *S*

>

>I just found out that my beloved brother-in-law has been dx w/ Lupus. Do

>any of you know of any websites where I can learn more about this? I am

>going several different directions at once here, and it will be a real

>time saver for me if any of you can help. Blessings to all my

> " pain-pals " . Sending loving energy your way. *S* Remember, smiling and

>laughter releases endorphins, so grit your teeth and smile even tho' you

>may feel like crying...that helps sometimes too. Keep the faith!!

>Diane .... " Crazy Lady Di " *L*

>

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