I believe it's held every two years. There was just a conference recently, at the beginning of July that I had the luck to attend, in Georgia. Basically, it's run by FIRST (the foundation for ichthyosis and related skin types) and it encompassed all the different types of ichthyosis. They had different seminars, disease-specific discussions, moms/dads/grandparents/spouse support groups (seperate ones), etc. It really was a lot of fun, and I wish they did it yearly, instead of every other year!!!
I think more info can be found on the FIRST website.
Mom to Julia