It’s official: Gorlin Syndrome is the name of our condition. It’s not Gorlin’s syndrome, Gorlin-Goltz syndrome, NBCCS, BCNS – it’s Gorlin Syndrome! WHAT’S HAPPENED? The World Health Organisation runs the International Classification of Diseases (ICD). Every 5 years ICD issues an … Continue reading →
Genetic Alliance UK is running a campaign to ensure UK hospitals can continue to be part of networks across Europe working to treat those affected by rare and complex conditions. These connected hospitals are known as European Reference Networks (ERNs). … Continue reading →
A trial to evaluate patidegib gel in preventing BCCs on the face will start soon. Participants need to have had 10 or more BCCs in the previous two years have two BCCs on the face at the time of the … Continue reading →
Why isn’t vismodegib recommended in the UK? Vismodegib (also known as Erivedge) is a medication shown to have some benefits in basal cell cancer. It’s taken by mouth and is the first ‘hedgehog pathway inhibitor’ to be licensed for use. … Continue reading →
The Gorlin Syndrome Group work with organisations in Scotland to raise awareness of Gorlin syndrome. However, we are aware that only a handful of individuals with the condition are currently in touch with us. It is hoped a recent press … Continue reading →
Why do clinical trials? Over the past couple of years, clinical trials are coming on line for people with Gorlin Syndrome. Clinical trials are usually used to test new treatments (for example, patidegib) or older treatments that are being tried … 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 →
Yes they are. Bifid ribs are ribs that are split in two. They cause no problems and need no attention.
It does appear that a large number of people with Gorlin Syndrome have this problem. It is nothing to worry about and will cause no problems. … Continue reading →
Yes. The second toe tends to be longer than the big toe resulting in the second toe getting pushed back.