Patient Conference & AGM
A huge thank you to all who attended the Patient Conference in Manchester on the 6th October 2018. It was a pleasure to welcome and meet with all. Feedback from attendees and speakers alike has been extremely positive with all … Continue reading →
Patient Conference & AGM 2018
The Patient Conference and AGM will take place in Manchester on Saturday 6th October 2018. The venue is the Crown Plaza Hotel, Ringway Road, Manchester Airport. The event commences at 9.00 am with refreshments on arrival for a 9.30 am … Continue reading →
Families in Scotland needed to test new toolkit
The Rare Resources project (formerly Fresh Steps) has developed a toolkit of information resources for families in Scotland who have received a diagnosis of a rare, genetic condition or who have an undiagnosed condition. The toolkit is a flexible resource … Continue reading →
New Gorlin Syndrome Patient Booklet
The Gorlin Syndrome Group has today launched a new 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 … 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 →
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 →
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 →
Benefit Changes – commencing April 2013
Major reforms to Welfare Benefits system in the UK. … Continue reading →
New Special Educational Needs resources
IPSEA has produced 40 new on-line resources to help parents take action with common Special Educational Needs issues. … Continue reading →
Does your child have special educational needs?
If your child has special educational needs it may well be worth visiting the IPEA website. Independent Parental Sspecial Educational Advice is a national charity providing free legally based advice to families who have children with special educational needs. All … Continue reading →
Information and Support
The Gorlin Syndrome Group is able to offer information on most aspects of the condition. We aim to support individuals affected by the condition and keep them updated with the latest developments or news in a variety of settings: … Continue reading →
NHS Choices
NHS Choices has a wealth of information about health, well being, availability of dentists, doctors and treatments available in your area. There is also a useful section on Living with a long term condition which gives information about what you … Continue reading →
Psychological Help
Counselling is not commonly offered on diagnosis or even later on. If you feel that you need extra help in coming to terms with Gorlin Syndrome or any other aspect of your life, don’t be afraid to ask for this … Continue reading →
Safe in the Sun
The skin of babies is delicate and parents should be aware of the extra dangers and know how to protect their children against the sun’s harmful rays. Sun damage can also cause premature aging, wrinkles and skin cancer. … Continue reading →
Insurance
The Gorlin Syndrome Group and Freedom Insurance link up in ‘Partnership Scheme’ … Continue reading →
Help with NHS Costs
If you are on a low income, you may be able to get help with NHS costs through the NHS Low Income (LIS). … 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 →
Care in the Sun
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. It is strongly recommended that patients: Stay in the shade whilst the sun at … 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 →
Review of Prescription Charges
Cancer patients urged to apply for free prescriptions from 25th January 2009. People being treated for cancer will be eligible for free prescriptions from 1st April 2009 and can apply for free prescriptions from today. … Continue reading →