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.
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 🌟
Dear Gorlin Community, As we approach the festive season, we want to take a moment to connect with you and gather your insights for our upcoming Fact Fridays. These sessions are designed to support you on your journey with Gorlin syndrome, providing valuable information and fostering a sense of community. This month, we invite you to reflect on what topics resonate most with you. Would you prefer to delve into mental health strategies? Are you interested in learning more about specific Gorlin facts? Or perhaps you're seeking practical information that can help guide you through your unique experience with this condition? We believe that your voice is essential in shaping our content. Therefore, instead of commenting here this week, we kindly ask that you share your thoughts via email. Please send your suggestions and ideas to vicky@gorlingroup.org. Your feedback will be instrumental in curating content that truly meets the needs of our community. We look forward to hearing from each of you and crafting informative sessions that enhance our collective understanding and support. Wishing you all a joyful lead-up to Christmas! Warm regards, The Gorlin Syndrome Group Team
Among the various manifestations of Gorlin syndrome, rib abnormalities such as bifid ribs, pectus excavatum, and pectus carinatum are notable. This article delves into these rib deformities, their implications for patients, and the complexities surrounding diagnostic imaging. Bifid ribs are characterized by a split or forked appearance of the rib bones. This abnormality can lead to complications related to thoracic structure and function. While not exclusive to Gorlin syndrome, the occurrence of bifid ribs is more prevalent among individuals with this genetic disorder. In addition to bifid ribs, patients may also exhibit pectus excavatum (a sunken chest) or pectus carinatum (a protruding chest). These conditions can significantly impact respiratory function and overall physical appearance. Pectus excavatum is particularly concerning as it may compress the heart and lungs, leading to potential cardiovascular issues. The identification of these rib abnormalities typically involves a combination of clinical evaluation and imaging studies. However, patients with Gorlin syndrome face unique challenges when it comes to diagnostic procedures: 1. Due to an increased risk of developing basal cell carcinomas and other malignancies associated with Gorlin syndrome, minimizing radiation exposure from X-rays is crucial. Patients are often advised to seek alternative imaging modalities when possible. 2. Despite the risks associated with radiation exposure, X-rays may still be required for accurate assessment and surveillance of rib abnormalities. In such cases, healthcare providers must weigh the benefits against potential risks carefully. Techniques like using protective shields or opting for lower doses can help mitigate some concerns. 3. Where feasible, non-radiative imaging options such as MRI or ultrasound may be employed to evaluate structural anomalies without exposing patients to ionizing radiation. Understanding the rib abnormalities associated with Gorlin syndrome is essential for effective management and care planning. While conditions like bifid ribs, pectus excavatum, and pectus carinatum present significant challenges, careful consideration regarding diagnostic imaging can help balance patient safety with necessary medical assessments. Ongoing research into safer imaging alternatives will further enhance care strategies for individuals living with this complex genetic disorder. By fostering awareness around these issues within both medical communities and patient circles, we can improve outcomes for those affected by Gorlin syndrome while respecting their unique health needs.
