• website updates and regular newsletters on the condition and latest information

• patient meetings offer the opportunity for patients, 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.

• the Gorlin Syndrome Group Family Route Map is a leaflet designed to provide signposts to sources of current information and appropriate services

• our telephone helpline 01772 496849 is available for patients wishing to speak to someone in confidence about their condition or to discuss any worries they may have about symptoms and treatment.

Many other sources of information and advice are available on the Web Links page of the website but if you can't find what you are looking for, please do not hesitate to contact us.