I have searched far and wide for a discussion group for KFS and have had no luck, so I am starting my own. My daughter was just diagnosed finally at the age of 13. I have spent countless hours on this computer and in the library researching. I am also looking for doctors and she is participating in a genetic research study in Australia. If you or someone you know is affected by this rare disorder and need somewhere to talk about it and compare notes, I hope this will be the place. We need somewhere to communicate and share. 2/12/04 I have posted Tabitha's history in the files that will be sent to you when you become a member to let you know where we are in our struggle and what we have learned along the way.
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