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On behalf of the Gorlin Syndrome Group Executive Committee we wouild like to wish sincere Seasons Greetings and a happy and healthy New Year to all our readers.
It has been a busy year!
We've welcomed a significant number of new patients and their families and/or carers looking for information about the condition and advice as to the most appropriate treatments and treatment centres. The Gorlin Syndrome Group on Facebook remains a thriving community and enables patients to share information and network with each other.
We've continued to work at a national level to ensure new treatments are available to those affected by Gorlin Syndrome. The introduction of the LDE225 clinical trial into the UK for Basal Cell Carcinomas (BCC) offers a treatment option for those who have a BCC greater than 1.5 cm, which is felt to be untreatable by other therapies such as surgery. It is obviously early days but we look forward to seeing the impact of this treatment for patients.
Changes to the commissioning of services in the NHS is beginning to 'bite' and we are grateful to The British Association of Dermatologists for continuing to keep us alerted to any service issues across the country so that we can advise patients accordingly.
Regrettably this year we were not in a position to organise a patient conference. This was brought about by illness and family commitments of The Gorlin Syndrome Executive Committee. Looking to next year, our 20th anniversary, we hope to be in a position to organise this popular patient event and look forward to welcoming patients and their families. We will be advising everyone as soon as a date and venue are confirmed.
We know many of you have had a difficult year with multiple and/or intensive surgery, we would like to take this opportunity to wish each of you well. If we can be of assistance with support or further information then please do get in touch.
Enjoy the Christmas break and have a happy and relaxing time with family or friends.
Very best wishes
The Gorlin Syndrome Group Exec Committee
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