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 Canadian Support Groups or Resources?
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rhodri cymru New member Posts: 1 |
posted October 15, 2006 10:13 PM
   
Hello There, I'm from Hamilton, Ontario. I've had ichtyosis all my life... I'm finding it a bit hard to get any Canadian information. Specifically support groups in the Southern Ontario region (preferably Hamilton). I've tried to google the information, but nothing substantial came up. Can someone please help or point me in the right direction? It would be much appreciated! Thanks. IP: Logged |
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gryphon Member Posts: 298 |
posted October 16, 2006 09:56 AM
Greetings Rhodri, Coincidently, that same question was posed a few days ago. I don't think that there is any. In your online search, you probably also came across the "Cdn Directory of Genetic Support Groups". In there, F.I.R.S.T. is listed as the relevant group for Cdn's with ich. I think, short of starting a Cdn support group yourself, you're unlikely to find one. There have been many members from CAN who have signed onto this BB over the years, many of whom are also from Southern ON. It's nice to have you join that growing fold. BTW what find of ich do you have? [This message has been edited by gryphon (edited October 16, 2006).] IP: Logged |
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threerxli Member Posts: 515 |
posted October 16, 2006 04:12 PM
Have you tried google"ing" the type of ichthyosis? With XLI, we have looked under X-linked ichthyosis, steroid sulfatase def., (STS), xp22.3, rxli, steroid sulfatase arylsulfatase C (STS) It was a hunt and peck towards the medical listing to find the same thing written differently. Emedicine is a great website, the oxford journals are great too, Some of the best websites are from other countries like Turkey, Germany, and Isreal. Great Britain too. If you give me the type of ichthyosis, I can help you do a search and email some of the websites IP: Logged |
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thehodgees Member Posts: 100 |
posted January 15, 2007 09:41 PM
Not too sure if you have checked back here, hun...but we live in Woodstock...about 15 minutes away from you...our DD was born with CIE...drop us an email! Sarah and Craig IP: Logged |
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