You should contact the Shriners Hospital.  They are wonderful people who help others all around the world --- On Wed, 6/25/08, rosezielinski <rosezielinski@yahoo.co.uk> wrote: From: rosezielinski <rosezielinski@yahoo.co.uk> Subject: [Neurofibromatosis] Hi All To: neurofibromatosis2@yahoogroups.com Date: Wednesday, June 25, 2008, 3:40 PM Hi. I'm Rosie, I have a 10 year old daughter with nf1. She has started to get lot of pain in her legs and is needing an op soon. Were in the UK, but there does not seem to be a lot of info on it here. I have tried to call NF Assosiaction a few times but they are only open certain times during the week??. My daughter has tumors down her leg and a very large one on the bottom of her foot, which causes her pain, her right leg is 3cm longer than her left. Her doctor said that the problems she is having are rare and there is not a lot of info for them to help her. Sorry if I'm moaning but info from the doctors is very limited. I am not sure what help she should be getting or check ups, any advice on this would be much appreciated. Rosie