Inherited Metabolic Disorders

Kathy Momtahan kmomtaha at ccs.carleton.ca
Mon Aug 7 12:57:46 EST 1995


deufel at uni-muenster.de wrote:
> In <3ulnkv$gb3 at whitbeck.ncl.ac.uk>, Simon Eaton <S.J.Eaton at ncl.ac.uk> writes:
> >I'm just testing the water to see if there is any interest in a discussion
> >group or newsgroup for inherited metabolic disorders. Whether such a group
> >would best fit into the bionet or sci.med domain I've no idea. My basic
> >premise would be for discussion of:
> >i) Biochemistry and Diagnosis
> >ii) Genetics and Molecular diagnostics
> >iii) Clinical observations and treatments.
> >iv) Genetic counselling and potential gene therapy measures.
> >
> This is just to signal our interest in such a group

I think that such a newsgroup would not only be valuable for
scientists who wish to share information but it would also help them
to find possible subjects for any gene therapy trials.  As a parent of
a two-year-old child with either Infantile Adrenoleukodystrophy or 
Infantile Refsum's, I am always worried that a gene therapy trial may
be on the horizon and that I might not know about it in time for my
daughter to be enrolled as a subject.




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