Joni, that explains why no one has heard about you here. I didn't realize that you are in Israel.
I'll look into what contacts we have out there and get back to you. In the meantime, definitely keep in touch with the other posters in this thread, who also have children with HI. Another mom with a child only a few months older than Omri is here: http://blessedbybrenna.blogspot.com
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"