The Gorlin Syndrome Group is following the recommendations of the UK government regarding COVID-19 (coronavirus). Individuals with Gorlin syndrome, in general, are not considered at greater risk for this virus. There are exceptions, these include being of advanced age, or … Continue reading →
Changing Faces, a charity based in the UK, offer a wide range of Self-Help for adults, families and young people. Learn new techniques to handle living with an unusual appearance. This includes advice on how to live with confidence, enjoy … Continue reading →
By law, children with special educational needs and disabilities are entitled to educational support. Help is available at Parental Special Education Advice (known as IPSEA). The service offers free legal advice and support to people with a child or children … Continue reading →
Counselling is not commonly offered on diagnosis or even later on. If you feel you need help in coming to terms with Gorlin Syndrome speak to your GP or Consultant.
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 →
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 →
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 →
