Gorlin Syndrome Group

This years sees the 20th Anninversy of the Gorlin Syndrome Group

How times flies!

It's hard to believe that the group has now existed for 20 years. Set up in 1992 by my late husband Jim, assisted by Professor Peter Farndon and Professor Gareth Evans, and their staff. Five people at the first meeting - wow how we have grown! We are now in contact with patients and their families worldwide.

The group came about on the back of our experience. For 10 years Jim underwent regular and varied medical procedures for the removal of 'rodent ulcers' (we know now that they were basal cell carcinomas). Despite our concerns and questions to medical staff no diagnosis was forthcoming.

It was following the death of our youngest daughter Anna, aged 5 1/2 months, in 1981 of a cardiac fibroma that we received diagnosis. We were to later find out via Jim's medical notes that Gorlin Syndrome had been suspected in 1972 but we hadn't been party to that information.

Jim worked with medical advisors to gather as much information about the condition to ensure that it was available to all those affected by the condition. It's been an honour to be part of Jim's vision and his legacy.

Diagnosis and treatments have improved over the years but there is still work to be done if GS patients are to receive the best possible healthcare. New treatments and clinical trials are on the way and give some hope for the future and it's our intention to we keep everyone informed.

I've met so many people affected by Gorlin Syndrome and made many friends along the way, all have been an inspiration to me and at times a source of support. My thanks go to all.


6 Replies

Happy 20th Anniversary !!

It always makes me wonder where would we be now if no-one invented the Computer, there were no advances in Medical Technologies or Science, or there was no World-Wide Web ... let alone no computer under the stairs !!


Thank you. No computers or advances in science or the world wide web, I dread to think! How things move on and an encouraging time with the new treatments and clinical trials. It's an encouraging time.


wishing everyone a happy 20th anniversary, hoping to meet up at the conference this year, be nice to catch up with friends


Thank you very much. A number of committee members have experienced health problems over recent months but we are now on with the planning. Watch this space.


20years,how amazing!!1Just so priviledged to have known Jim,such a deeply caring and loving man,and to be part of his legacy now.


Thank you Sally, your comments are appreciated.


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