Hello,

our group is still active and has a rising number of members. O.K. itīs just
a hand full but we have occasion to talk to each other and give help.

If you are interested, just have a look on our homepage:
www.acrodysostosis.org

There you find the group members and probably can contact the one that is
close to you.

If you need to talk or want any information, just let me know.

Best regards
Michi
----- Original Message -----
From: "dani_nowthencreations" <rcalgal415@...>
To: <acrodysostosis@yahoogroups.com>
Sent: Wednesday, November 06, 2002 12:19 AM
Subject: [acrodysostosis] Granson has this disease


> I just found this group - now I am wondering if it is even still
> active?
> I just got the diagnosis on the 18 grandson I am raising that he has
> this disease. He has had many problems for a long time now and when
> I complain to doctors about it, they would just ignore me.
> I would like to know more about this disease from real peole who are
> involved with real children who do have it - not just a technical
> view of it from a doctor.
> I have an appointment with his doctor on the 20th of November and
> they want to talk to me more about it.
> Thank you for any help you can give me -- Dani
>
>
>
>
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