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Osteogenesis imperfecta

Erinvp120Erinvp120 member
in Special Needs
I know I've posted this before, and I realize it's not a common disorder just looking for some moms out there that have kids or they themselves have OI. No particular questions, I guess just advice and experience! TIA!
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Re: Osteogenesis imperfecta

  • EnzaEnza member
    My son does not have this condition, however it was suspected when I was pregnant and we were trying to determine the cause of a bone abnormality visible on u/s. at the time I found several yahoo groups with parents whose children have OI. Have you joined any if those lists?
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  • Erinvp120Erinvp120 member
    I have not successfully been able to find any support groups online. I was told to go on to OI.org foundation but have been unsuccessful. I will try again. Thank you! Hope everything turned ok with your little one?!
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  • EnzaEnza member
    This group seems to be the most active: https://health.groups.yahoo.com/group/OIparents/

    You'll need to make a yahoo ID and then request membership .

    HTH!
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  • Erinvp120Erinvp120 member
    Thank you so much enza! I will sign up tonight!
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