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 →
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 →
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 →
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 →
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 →
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 →
This website is included on our web links page but thought it beneficial to include under the category Care in the Sun. … Continue reading →
Major reforms to Welfare Benefits system in the UK. … Continue reading →
IPSEA has produced 40 new on-line resources to help parents take action with common Special Educational Needs issues. … Continue reading →
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 →