Re: Trichothiodystrophy

Posted by Michelle Curtis on January 27, 19100 at 22:51:53:

In Reply to: Re: Trichothiodystrophy posted by Michelle Curtis on January 27, 19100 at 18:55:45:

: My 4 year old daughter has Trichothiodystrophy. She has sparse brittle hair, Developmental delay and growth retardation. I have found lots of information on the net and an organization called "Nords" has sent me lots of information. Their address is http://www.rarediseases.org. I would also be interested in contacting other families dealing with this very rare disorder. My email address is sitruc@bigpond.com

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: : My 4 year old daughter has Trichothiodystrophy. She has sparse brittle hair, Developmental delay and growth retardation. I have found lots of information on the net and an organization called "Nords" has sent me lots of information. Their address is http://www.rarediseases.org. I would also be interested in contacting other families dealing with this very rare disorder. My email address is sitruc@bigpond.com




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