by Margaret | 29 Mar 2020 | Guidance and Support
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...
by Margaret | 15 Sep 2019 | Guidance and Support
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 healthy relationships,...
by Margaret | 13 Dec 2018 | Guidance and Support
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...
by Margaret | 1 Dec 2018 | Guidance and Support
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. Practical, medical, emotional and financial support is also available from: Macmillan Cancer Support...
by Margaret | 27 Jul 2018 | Guidance and Support
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 on...
by Margaret | 22 Jul 2018 | Guidance and Support
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 visits for monitoring and treatment of the...
