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.
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.
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....
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
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 vicky@gorlingroup.org. 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
Good evening! We hope this message finds you well and preparing for the upcoming storm. Please remember to stay safe and take care of yourselves during this time. As we continue our journey together through the challenges of Gorlin syndrome, we want to remind you that this group is a supportive space where we can share experiences, insights, and encouragement. Your stories matter, and they can make a difference in someone else's journey. With that spirit in mind, we invite each of you to contribute topics or facts that you would find particularly helpful or enlightening in your own experiences with Gorlin syndrome. Your contributions will not only enrich our discussions but also provide valuable information for everyone in the community. Please send your topic suggestions to vicky@gorlingroup.org by the end of the week. We look forward to hearing from you and appreciate your willingness to share your knowledge! Stay safe and connected, The GSG Team 🌟
