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Question
Posted by: Debbie Hooper | 2005/12/06

Hypophosphatemic Rickets

My daughter has hypophophatemic rickets. She is 7 years old and was diagnosed 18 months ago, although she had been seeing an orthopaedic surgeon since she was 2 years old. She is on treatment but I have battled to find out more information about the condition and would perhaps like to contact other parents with children with the same condition. Could you help me?

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Our expert says:
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Dear Debbie,
I found the following for you to read:
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Hypophosphatemia%2C%20Familial
http://prospectivemembers.kaiserpermanente.org is a site where you can become a member and get more info.
To contact other parents with children with similar problems, I think you could ask a Nephrologist near you if he knows of a support group in your area. I can give you some names if I know more or less where you live.

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