Your best bet is to call FIRST (firstskinfoundation.org) and ask them for a reference to someone in your area. If you're in a major city, there is probably someone sort of close by. Your regular doctor could also submit your info to the tele-ich program and the medical team from FIRST's advisory board would look at it.
A third thing you might look into is a research study at Yale where they are doing free genetic testing in exchange for a blood sample and a background history and some pictures. Contact email@example.com if you're interested.
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.
email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"