The gene for Gorlin Syndrome was isolated in 1996 simultaneously in Australia and the U.S.A. Chromosome 9 was found to be the faulty gene in 1993. This was achieved after accessing Information and data from families in the North West … Continue reading →
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 … Continue reading →
If your child has Gorlin Syndrome it may be useful for you as a parent to advise teachers and other staff at school about your child’s educational and other needs, i.e. use of sunscreen and the need for regular hospital … Continue reading →
In recent weeks we have been discussion with LEO Pharma regarding the development of a new medication. The purpose of the survey is to find out how individuals would feel about a medication which could prevent basal cell cancers. The … Continue reading →
All members of the Board of Trustees carry out their duties on a voluntary basis and in accordance with the Gorlin Syndrome Group Constitution. Trustees give their time to the efficient administration of the charity and the fulfilment of its … Continue reading →
Sun damage can cause premature aging, wrinkles and skin cancer. Sunlight may be one of the environmental agents promoting the appearance of BCCs in Gorlin Syndrome. Whatever your age, the best way to enjoy the sun safely and protect your … Continue reading →
A wide range of people attend genetic counselling services and can include newly diagnosed patients, new parents or couples planning a family. Genetic counsellors work along side clinical consultants, nursing and primary care teams so you may see more than … Continue reading →
Psychological counselling is not commonly offered on diagnosis of Gorlin Syndrome or even later on. If you feel that you need extra help in coming to terms with your condition or any other aspect of your life, don’t be afraid … Continue reading →
Recently published report courtesy of Rare Disease UK. This report is the result of a project that, through imaginative and creative techniques, provided children and young people the opportunity to share their stories, in their own words. This gives us … Continue reading →
Rare Disease UK report reveals that: – Living with a rare condition can have a huge impact including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts. – Many of the drivers of poor mental health reflect issues that are … Continue reading →
