COVID-19 (coronavirus) Guidance
The Gorlin Syndrome Group is following the recommendations of the UK government regarding COVID-19 (coronavirus). Individuals with Gorlin syndrome, in general, are not considered at greater risk for this virus. There are exceptions, these include being of advanced age, or … Continue reading →
Do you or a family member lack confidence because of a visible difference?
Changing Faces, a charity based in the UK, offer a wide range of Self-Help for adults, families and young people. Learn new techniques to handle living with an unusual appearance. This includes advice on how to live with confidence, enjoy … Continue reading →
Does your child have special educational needs?
By law, children with special educational needs and disabilities are entitled to educational support. Help is available at Parental Special Education Advice (known as IPSEA). The service offers free legal advice and support to people with a child or children … Continue reading →
Psychological Help
Counselling is not commonly offered on diagnosis or even later on. If you feel you need help in coming to terms with Gorlin Syndrome speak to your GP or Consultant. … Continue reading →
Gorlin Syndrome Patient Booklet
The Gorlin Syndrome Group launched a patient booklet which we are hoping all our readers will find it a useful resource for individuals and families diagnosed with the condition. The booklet provides information about the condition and includes various sections … Continue reading →
Education
If your child has Gorlin Syndrome it may be useful for you as a parent to advise teachers and other staff at school about your child’s educational and other needs, i.e. use of sunscreen and the need for regular hospital … Continue reading →
Ways to enjoy the sun safely
Sun damage can cause premature aging, wrinkles and skin cancer. Sunlight may be one of the environmental agents promoting the appearance of BCCs in Gorlin Syndrome. Whatever your age, the best way to enjoy the sun safely and protect your … Continue reading →
Pyschological Impact of Living with Long Term Condition
Psychological counselling is not commonly offered on diagnosis of Gorlin Syndrome or even later on. If you feel that you need extra help in coming to terms with your condition or any other aspect of your life, don’t be afraid … Continue reading →
Understanding Children and Young People’s Experiences
Recently published report courtesy of Rare Disease UK. This report is the result of a project that, through imaginative and creative techniques, provided children and young people the opportunity to share their stories, in their own words. This gives us … Continue reading →
Living with a rare condition: The Effect on Mental Health
Rare Disease UK report reveals that: – Living with a rare condition can have a huge impact including anxiety, stress, low mood, emotional exhaustion and suicidal thoughts. – Many of the drivers of poor mental health reflect issues that are … Continue reading →
Carers Support
NHS Carers Direct An extremely useful website dedicated to carers. A full range of advice and information for every aspect of a carer’s life. Crossroads Care (link not available at the moment 18.4.18) Crossroads Care is Britain’s leading provider of … Continue reading →
Benefits and Finance
Citizen’s Advice Bureau Citizen’s Advice Bureau (CAB) On-line benefits advice. Department of Works and Pensions The Department of Works and Pensions for information about the full range of benefits. Turn2us On-line service which helps people access information on all benefits … Continue reading →
External Links To Additional Support
BCCNS Life Support Network Support Group based in the US for those people affected by Gorlin Syndrome Australian Gorlin Syndrome Support Group New resource for Gorlin Syndrome patients in Australia. Brain Tumour UK BTUK was founded in 1997, the charity … Continue reading →
Skcin website
This website is included on our web links page but thought it beneficial to include under the category Care in the Sun. … Continue reading →
Carers
Are you caring for a child, parent, partner or friend with Gorlin Syndrome? Are there times you feel you need additional support? The Princess Royal Trust for Carers is the largest provider of comprehensive carers support services in the UK. … Continue reading →