hi there I was really astounded when I received something entirely in
French regarding Nomids. I replied back that I do not spreak French.

Hello Susan,

That's great to hear that people are finding the website easily and that it
is useful. As you suggest, we could add a paragraph or two from doctors
provided we had their permission to publish on our website. I suspect that
professional medical staff might be reluctant to contribute to a website and
network that are outside their control and which have no real
accountability. Maintaining the distinction between a support group network
and professional medical network is perhaps in everyone's interest. I think
our role is to help parents feel supported and informed by our network and
not to be a be a substitute for professional medical help. Where information
on our site looks official, I've tried to be clear about the source (note
the disclaimers on the FAQ and Medications pages, for example). The
distinction also leaves us free to speculate, complain, etc -- all very
helpful in our supportive role but something professional medical people
would probably prefer not to be associated too closely with.

Of course, we can always link to any publicly available medical websites, as
we have done to PRES and CCAA, in the bottom border of each page on our
website. These sites are rather generic for our purposes and it would be
ideal if the authors added a Nomid/Cinca page with the kind of information
you suggest below. The medical community also has their own closed networks
and I could simply add a link or sentence aimed at getting medical people in
touch, if someone like our own Dr Warren provided the right text.

John Barton

-----Original Message-----
From: Alan Downey [mailto:alan.downey@...]
Sent: Saturday, March 15, 2003 5:02 PM
To: nomidsyndrome@yahoogroups.com
Subject: Re: [nomidsyndrome] Re: NOMID/ fundraising


Kristen was just at Children's this week for an angioplasty, and guess what,
they search on the web for NOMID information and found the web-site. Every
MD who treated her found it very interesting and helpful. I would recommend
that we see if our MD's could write a paragraph or two that could be placed
in there with professional contacts, as it obviously was a source ( a sole
source ) of easily accessible information - Any thoughts ? - Susan
-----Original Message-----
From: Kate and John Barton <jkbarton@...>
To: nomidsyndrome@yahoogroups.com <nomidsyndrome@yahoogroups.com>
Date: Sunday, March 02, 2003 3:01 PM
Subject: RE: [nomidsyndrome] Re: NOMID/ fundraising


>
>Karen, I understand your concern with the different mutations in these
>children, I believe that up to now only half of the children have the same
>gene and for all we know this isn't the nomid gene . But it does give us a
>place to start. As my own Doctor said the symptoms are what we need to be
>treating. And alot of these children have those symptoms.
>
>I forgot to add that I also spoke to the Arthritis magazine about an
article
>on NOMID and and all i got from them was "what's that"!.
>
>I like your get up and go approch and any ideas as to where to go from here
>are very needed.I'm not trying to pull you down I promise. Gerard from the
>Netherlands has managed to get us noticed in some of the european societies
>and now that we have had the meeting in Washington I feel that it's not far
>away. As I said at that meeting we have waited over 20 years for any help
in
>finding a clue to our children's health.
>
>LOve Katexxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
>
>
>
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