by managedSupport | 28 May 2025 | Events, News
Our annual Gorlin Syndrome Group community gathering is taking place on Saturday 25th October this year, in central Birmingham.. The day will start from 10am and close around 4.30pm. The gathering is an opportunity for us all – whether you have Gorlin or know someone...
by managedSupport | 7 Jun 2023 | News, Support our work
David Rowley, previous Chair of Gorlin Syndrome Group, is running his first Half Marathon in September of this year, taking part in the Robin Hood Half in Nottingham, and raising funds for Gorlin Syndrome Group. The charity and this rare genetic condition are very...
by Margaret | 31 Jan 2019 | News
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). ERNs were...
by Margaret | 28 Dec 2018 | News
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 release will raise awareness to...
