Fw: Response from `Got Questions? Ask Me...'

[Guest guest]

I found this website and wrote looking for new info. Nothing really new,

but here are some websites that some of you may not know about.

W

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Re: Response from `Got Questions? Ask Me...'

> :

>

> I am sending you the sites I use as a nurse to look up medical things. As

a

> medical person we get to find some really good sites for references. You

> have what is called a rare or orphan disease. Which means less than

20,000

> people have it. My diseases are also in the rare ones. Unfortunately

> because not alot of people have these diseased they are not studied

because

> they are not " profitable " for the drug companies or the hospitals. So,

help

> is not around the corner.

> I rely alot on NIH which is the National Health Institute and they have

some

> of the best doctors in the country and they are so helpful. They answer

> their email and will help. They know what it is like to have a rare

disease

> and how hard it is to find answers. NIH also has clinical trials and you

> can get on their email list. I am they send me trials that are in my area

> and if there is one that fits me. Then I can go and get treatment for

free

> and also learn more about my diseases because NIH studies our diseases.

> Then there is NORD, which is a website for Rare Diseases. I think it is

> www.nord.org or net or com. You could look it up on a search engine.

They

> can link you with other people that have what you have.

> Also I gave the address to the Merck manual it is like our bible in the

> hospital to look up diseases and things about them. They offer it on line

> so you could look up Polychondritis.

> Good, luck if there is any more I can help you with do not hesitate to

> contact me.

> Anne

>

> http://www.merck.com/pubs/

> http://www.nlm.nih.gov/

> http://www.nih.gov/health/

> http://chid.nih.gov/

>

>

> webserver@... writes:

>

> >

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> > WriterName:

> > WriterEmailAddress: susuw@...

> > SendButton: Send

> >

> > MessageToAnne:

> >

> > I have a rare disease called Relapsing Polychondritis. I am constantly

looking for new info on this disease.

> > Any help from you would be GREATLY appreciated.

> > Thank you in advance,

> > Woods

>

>