My 14 year old daughter has been diagnosed with gorlin syndrome this wk she dislocated her jaw 6 months ago anyone else experienced this

My daughter had jaw cysts removed in July her jaw then dislocated in December despite wiring the jaw surgery several times hasn't worked she has had Botox in the jaw & this is being repeated in 2 wks as still dislocated I'm unsure what gorlin will mean for her? R there any support groups out there? Your help is much appreciated xx

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  • The Gorlin Syndrome Group are a national charity based in the UK. We offer information about the condition on our website at and have a telephone helpline and individuals can email direct to us (details on Contact Us Link on the website). If you wish to speak to someone in confidence then do please get in touch.