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Registered Charity No: 1096361 |
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Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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| Guidance and Support |
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The Gorlin Syndrome Group is
able to offer guidance, advice and information on most aspects of the condition.
This area of the wesbite gives additional information and provides numerous links to other sources of support. Click on any one of the links in Guidance and Support to the left for more information. | |
We aim to support patients and their families and keep them updated with the latest developments or news in a variety of settings:
- website updates and regular newsletters on the condition and
latest information
- patient meetings offer the
opportunity for patients, their families and carers to meet with others
affected by the condition and listen to experienced healthcare professionals
talk about the many aspects of the condition.
- our telephone helpline 01772 496849 is available for patients wishing to speak to someone in confidence about their condition or to discuss any worries they may have about symptoms and treatment
The NHS has produced a set of 'Question to Ask' for patients to take along to appointments with a specialist. This useful resource is available at GP surgeries or on the Department of Health website, just enter Questions to Ask in the search box.
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Written and produced by Professor P A Farndon, Clinical
Geneticist at the National Genetics Education and Development Centre UK, Jim
Costello (deceased) & Margaret Costello, unless otherwise stated. |
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