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Hi guys, I want to make sure that everyone knows we had to move our group. There were problems on Tribe so we moved to the Google groups!
groups.google.com/group/Engelmanns
Engelmanns@googlegroups.com
You can sign up and then we can all keep in touch!
Hope all is well with everyone!
~Mary
groups.google.com/group/Engelmanns
Engelmanns@googlegroups.com
You can sign up and then we can all keep in touch!
Hope all is well with everyone!
~Mary
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Re: We've moved!
Fri, February 8, 2008 - 6:08 AMWe've actually got three CED groups on the go at the moment,, we figured that the more there were the easier we'd be found by anyone researching CED!
Its up to you which of the groups you join/dont join.. I still check them all and will pass on anything that might be of importance or interest to you!! Just choose the one(s) you like best! :o)
Chris. xx -
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Re: We've moved!
Tue, February 12, 2008 - 9:15 AMWe have tribe, google and what is the other one? Let me know and I will sign up for that one too! How are you doing Christina? I hope all is well. How is the pain level? It's winter time in California (yes, we do have a little bit of a winter time! hehe!) The cold weather really effects my pain level. February is the worst time of year for me.
I wrote a letter for Nikki and will post it so if anyone else would like to write one. It can't hurt, hopefully it will help!
Talk to you soon,
~Mary -
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Re: We've moved!
Sat, March 15, 2008 - 11:39 PMHi Mary,
Chris and I also created a CED support group through Yahoo. The address is at... health.groups.yahoo.com/group/..._Group/
We thought it was a good way to meet new people who have CED but are looking for information (about CED) through the Yahoo search engine. Please feel free to join, at the moment it is just Chris and I.
Take care, give all my best to your family.
Lauren
xoxo
Ps. I hope you like the picture of the duckling on our yahoo site - It is supposed to represent our 'waddling gait'!! hehe :o) -
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Re: We've moved!
Thu, May 8, 2008 - 4:20 AMOk, so i have become a member of wikipedia and have added the links in there on the Engelmanns Syndrome AND Camurati-Engelmanns Disease pages so if people look it up they can access our support groups both on here and at google. If you wish me to add anything else to the wikipedia pages just let me know. Hoping you are all well,
Lauren. -
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Re: We've moved!
Wed, June 4, 2008 - 12:22 AMHey 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" on Google, you will find that the GARD website often appears. 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. Thanks everyone, all my best wishes,
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: GARDinfo@nih.gov
Fax: 240-632-9164
Mail: P.O. Box 8126 Gaithersburg, MD 20898-8126
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