Welcome to
Gorlin Syndrome Group
The Gorlin Syndrome Group is a UK-based support network offering guidance and information to individuals with Gorlin syndrome, and their families and carers.
If you, or someone you know, has been diagnosed with Gorlin syndrome there are undoubtedly lots of questions and emotions right now.
We know.
We’ve been there.
Take a look at our booklet About Gorlin Syndrome and please do contact us if you have any questions.
We are a patient support group and registered charity offering guidance and information to individuals with Gorlin syndrome, their families and carers.
The group is organised by volunteer trustees, supported by a medical advisory panel.
We aim to:
- Offer guidance & information to individuals with Gorlin syndrome, their family, carers and friends
- Raise awareness of Gorlin syndrome
- Promote research into Gorlin syndrome
Gorlin syndrome is a rare medical condition caused by a fault in one of the thousands of genes we possess.
It affects many areas of the body and increases the risk of developing cancerous and noncancerous tumours.
We hope you’ve had a great start to the year! Your feedback helps us grow, improve, and build an even stronger Gorlin syndrome community.💙 📝 It only takes a few minutes to complete our short survey—and it makes a BIG difference! 👉 Link in the comments! Thank you for being amazing and for being part of this community 🙌
Our Community Day is fast approaching on Saturday 25th October in central Birmingham. We have some excellent speakers lined up including key note speakers in MaxFac and Dermatology. The cost for the full day is just £50 which includes a full day of activities which includes talks, Q&A, testimonials and networking. We do require a minimum number of attendees for the event to go ahead and we are close to that now – if you are intending to come but haven’t bought your ticket yet, please can you do so before the deadline of Sunday 21st September (this weekend). We really hope to see you there and we look forward to great day together.
Our next Gorlin Syndrome Group Community Day (formerly our Annual Conference) is taking place on Saturday 25th October in Birmingham. Here is our Secretary Steve, explaining why he is coming.... It would be great if you came too. Don't let the cost stop you, do get in touch info@gorlingroup.org - Tickets can be purchased here: https://www.eventbrite.com/e/gorlin-syndrome-group-community-day-tickets-1339760552879
The Community Day early bird rate has been extended until midnight on 14th July!! This is a great opportunity to get your tickets at a reduced rate of £40 instead of £50. I can’t tell you how valuable the day is to learn more about Gorlin syndrome as well as networking with those who understand what it’s like to live with Gorlin syndrome.
Just a reminder our early bird ticket discount expires on Monday (30th June). The early bird price is £40 per person but will rise to £50 from 1st July. Please do consider coming to our annual event - it would be great to see you and spend some time with our Gorlin family. You can get your ticket here:
Small Charity Week is a great time to highlight the incredible work small charities, such as Gorlin Syndrome Group do – not just this particular week, but throughout the year. Most small charities, like ours, are run by a group of volunteers who generously give up their time to help us support those with Gorlin syndrome, their families and carers. Small charities are vital to their communities, and Small Charity Week is dedicated to celebrating their impact. They are often underfunded and struggle for visibility. I am forever grateful to our volunteers and medical advisors for all they do to support GSG in helping raise awareness of both Gorlin syndrome and the Gorlin Syndrome Group. If you can spare some time to support us in any way, whether by volunteering as a trustee or ambassador for the Gorlin Syndrome Group, or by fundraising for us, please get in touch via info@gorlingroup.org. We would love to hear from you.
