Gorlin Syndrome Group - UK

02/02/2026

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 🙌

16/09/2025

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.

The gathering is an opportunity for us all to get together, learn from our Medical Advisors, share our journeys and have a fun day.

15/07/2025

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 [email protected] - Tickets can be purchased here: https://www.eventbrite.com/e/gorlin-syndrome-group-community-day-tickets-1339760552879

30/06/2025

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.

25/06/2025

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:

The gathering is an opportunity for us all to get together, learn from our Medical Advisors, share our journeys and have a fun day.

20/06/2025

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 [email protected]. We would love to hear from you.

10/06/2025

Don't forget our early bird ticket price finishes on 30th June - so if you want to join us, do it this month! (You are still very welcome to come, but ticket price increases to £50 per person from 1st July!). You can book your ticket here: https://www.eventbrite.com/e/gorlin-syndrome-group-community-day-tickets-1339760552879

Here's some information on what you can expect from the day....

30/03/2025

Save the date!!!

31/12/2024

Dear Gorlin Syndrome Community,

As we approach the end of 2024, we at the Gorlin Syndrome Group want to take a moment to extend our heartfelt wishes for a prosperous and fulfilling 2025. This past year has been a journey filled with challenges and triumphs, and we are grateful to have you alongside us as we navigate the complexities of Gorlin syndrome together.

Looking ahead, we are excited about the opportunities that await us in raising awareness for Gorlin syndrome. Our mission remains steadfast: to educate, support, and empower individuals affected by this condition. With your continued engagement, we can amplify our voices and reach even more people who may benefit from understanding Gorlin syndrome.

We encourage you to stay connected with us. Your stories, insights, and experiences are invaluable as they help shape our community’s efforts. Whether through sharing on social media or reaching out directly, every interaction counts in fostering awareness and support.

Thank you for being an integral part of our journey. Together, let’s make 2025 a year of hope, progress, and greater understanding of Gorlin syndrome.

Best wishes,

The Gorlin Syndrome Group

13/12/2024

Happy Friday!

As this is the final Fact Friday of 2024, I find myself reflecting on the incredible journey we've shared this year. It has been a time filled with growth, learning, and unwavering dedication from each member of our team. As Chair of GSG, I want to extend my heartfelt gratitude to our Trustees, Ambassadors, and Medical Advisors. Your commitment and hard work have been instrumental in propelling our mission forward.

With Christmas just around the corner, the GSG team is gearing up for a well-deserved break. It’s essential that we take this time to recharge and celebrate the festive season as we transition into 2025.

I encourage you all to keep the lines of communication open during this period. If you have any ideas or suggestions for future Fact Fridays or initiatives for us to explore as a charity, please don’t hesitate to reach out via email at [email protected]. Your insights are invaluable as we strive to make an even greater impact in the coming year.

Wishing each of you a Very Merry Christmas and a Happy New Year! May this festive season bring joy, peace, and inspiration as we look forward to new beginnings together.

Warm regards,

Vicky
Chair of GSG