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2012 Conference and Reunion Will Break All Records
This summer's conference is on track to break all previous records for overall attendance, number of sessions, number of families, number of people with nevi, number of countries represented, number of presenters, scientists and researchers in attendance, etc. For the first time ever, it is possible we could run out of space.
You name it! There is nothing about this conference that won't be unprecedented!
(more)We Have Our Work Cut Out for Us
"I realized something here for the first time: that the vast majority of the key players in the world Rare Diseases scene are the parent or grandparent of a child with one. Speaker after speaker here in Tokyo would begin or end their talk with a personal note about, or a photographic tribute to, the one for whom they were doing it, the one who had died, the one who had been cured, the one who spent years looking for a diagnosis or treatment. I kept a tally and I concluded that for 80-90% of these speakers it is personal." (more)
Our Families
Hi, I'm Rita, nevus owner for 66 years. I was born in a small town in Indiana with a giant congenital melanocytic nevus covering more than 90% of my body. My parents quickly brought me to New York where I was raised in a Catholic children's convalescent home, which afforded me the necessary medical treatment needed. I had many skin graft surgeries as a child to remove the nevus that covered 3/4 of my face, the front of my neck and my left arm from the elbow to the knuckles. (more)


















