Added: 2 years ago
From: EmoryHealthSource
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  • There are also at least two non-profit organizations that can provide information about Gorlin Syndrome: The BCCNS Life Support Network (USA) and the Gorlin Syndrome Support Group (UK).

  • Further to my first comment on Dr Berger's definition of Gorlin's Syndrome, the best advice I can give you from someone who has this syndrome, is talk to as many people in the know as possible, as each case is as individual as you are and not all of the characteristics of the syndrome are suffered by all patients. There is also a lot of information on the internet on Gorlin Syndrome and other related syndromes of the same origin. There is light in what may at first appear to be a dark tunnel.

  • I hope Dr Mitch Berger undertakes further research on this very rare syndrome in the hope that should he be asked another similar Real Question in the future, he will be able to provide a Real Answer. To state this syndrome is made up of three cancers which occur simultaneously is not entirely correct. I have Gorlin & Goltz Syndrome and although there is a predisposition to BCC's, bone cancer and medulloblastomas are more rare. In Australia, medulloblastomas occur in less than 7% of cases.

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