I've been talking with Les, and he had the WONDERFUL idea of trying to get a support group together through Stanford University for people and parents of kids with ichthyosis. I've talked to a couple doctors at Stanford, and have an appointment with our regular dermatologist this coming Thursday to talk more about it. There's also a wonderful woman who Les talks very highly about, who's the mother of a child with EB, and is very supportive (but I can't for the life of me remember her name!!) who might be willing to help too.
I'm just trying to get a general idea of how many people would be willing to come to a support meeting once a month, or every other month. [img]http://www.ichthyosis.com/ubb/smile.gif
[/img] I know it would be really helpful to me, and I'd hope that other people would want to participate too! [img]http://www.ichthyosis.com/ubb/smile.gif
Also posting this in the General Discussion. [img]http://www.ichthyosis.com/ubb/smile.gif