The Gorlin Syndrome Group launched a patient booklet which we are hoping all our readers will find it a useful resource for individuals and families diagnosed with the condition.
The booklet provides information about the condition and includes various sections on genetics, diagnosis, surveillance and treatments, to name a few. Many of the links in the booklet relate to further sources of help in the UK. Take a look and check it out, the document can be accessed via this link Patient Booklet
The Gorlin Syndrome Group would like to thank all those who took part in the focus groups, interviews, and on-line survey and all who helped in the development of this guide.