GARD - Finding CED Newbies!!

[Lauren]

Hey Everyone,

I recently received an email from GARD - The Genetic and Rare Disease
Information Centre (the email is posted below).

If you search for "Camurati-Engelmann Disease" through Google, you
will find that the GARD website appears often. I thought it worthwhile
to add our links to this site, hence people newly diagnosed with CED
will find our tribe and support groups faster, in addition to the
links on our CED wikipedia page.
If you find another website similar to GARD, then you may also wish to
email them and suggest they do the same.

We have also added information to Wikipedia's pages about CED (under
'Camurati Engelmann Disease' and 'Camurati-Engelmann Syndrome'),
including the links to this Google Group site, the Yahoo CED group
site, and our CED Tribe website.

* Just so you know - On the wikipedia CED page there is a statement
that CED people have 'webbed feet' and therefore swim much faster than
normal people - this is just a joke put on there by some of our
beloved CED members as a bit of a laugh in regards to our legendary
CED 'waddling gait'!!! hehe :o) Enjoy!

Thanks everyone, all my best wishes to you and your family.
Cheers,
Loz

_____________________________________________________________________________________________
The GARD Email received May 22, 2008:

Dear Lauren,
You recently sent an e-mail to the Genetic and Rare Diseases (GARD)
Information Center regarding two online communities for Camurati
Engelmann disease. We appreciate you sharing these resources and your
positive experience with them. We have added these groups to our Web
page on Camurati Engelmann disease. You can view the updated resource
page at the following link. The Tribe.net and GoogleGroup Camurati
Engelmann disease online communities have been added under the header
"Live Chat / Ask-an-Expert" in the "Services" section.

rarediseases.info.nih.gov/GARD/...e.aspx

If you have any other comments or concerns, please contact us again.
Sincerely,

Sarah Church
Information Specialist

The Genetic and Rare Diseases Information Center was established by
the National Human Genome Research Institute and the Office of Rare
Diseases at the National Institutes of Health to provide responses to
public information requests. Information Specialists are available
Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding
Federal holidays), to respond to questions about genetic and rare
diseases. Telephone: 888-205-2311
TTY: 888-205-3223
Email: GARD...@nih.gov
Fax: 240-632-9164
Mail: P.O. Box 8126 Gaithersburg, MD 20898-8126