Ron.Portnoy@f3.n157.z1.fidonet.org (Ron Portnoy) (11/21/90)
Index Number: 11955
[This is from the Rare Disease Conference]
Anybody out there hear of this diagnosis. We have a 10 year old girl
born with this syndrome, but as you can guess there is not a lot of
material to read and what there is is outdated.
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Internet: Ron.Portnoy@f3.n157.z1.fidonet.orgButch.Walker@p0.f3.n157.z1.fidonet.org (Butch Walker) (11/21/90)
Index Number: 11956
[This is from the Rare Disease Conference]
Ron have you tried N.O.R.D.? (National Organization for Rare
Disorders). They can be reached at 1-800-999-NORD
* Via ProEdit 3.2R
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Internet: Butch.Walker@p0.f3.n157.z1.fidonet.org