Supporting Patients

Information and Support

The Gorlin Syndrome Group is able to offer information on most aspects of the condition.

We aim to support individuals affected by the condition and keep them updated with the latest developments or news in a variety of settings: 


  • website updates and newsletters on the condition and latest information
  • patient meetings offer the opportunity for individuals, their families and carers to meet with others affected by the condition and listen to experienced healthcare professionals talk about the many aspects of the condition.
  • our telephone helpline 01772 496849 is available for anyone wishing to speak to someone in confidence about their condition or to discuss any worries they may have about symptoms and treatment.

 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
Gorlin Syndrome community on HealthUnlocked
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