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 →
The Gorlin Syndrome Group work with a number of organisations in Scotland to raise awareness of Gorlin syndrome (also known as Nevoid Basal Cell Carcinoma syndrome). We are, however, aware that only a handful of individuals are in touch with … 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.
In Gorlin Syndrome individuals are at a greater risk of developing BCCs. It is important to stay in the sun. Protect yourself by using a sun block or high factor sun screen. Cover up with hats, long sleeves and sunglasses … Continue reading →
There is no evidence to suggest that fibromas or cysts affect fertility.
Jaw cysts should be treated when small. The only sure way of detecting a jaw cyst is by x-ray or MRI. It is therefore sensible for regular screening at intervals recommended by your geneticist or oral consultant. This will be … Continue reading →