Gorlin Syndrome Survey - closing date 3rd May 2013

There is still time to participate in the on-line survey but hurry closing date is 3rd May 2013. Read on for more information. The Gorlin Syndrome Group UK, is calling for people with Gorlin syndrome across the UK to complete a short 15-20 minute survey.

To participate in the survey, please click on the link below:

survey.euro.confirmit.com/w...

The survey is being performed to better understand the experiences of Gorlin Syndrome patients. In particular, patients' experiences of disease diagnosis, treatment and follow up care will be assessed. This will help identify areas that are currently working well and where improvement could be made. The survey has been compiled by the Gorlin Syndrome Group in collaboration with Consultant Dermatologist, Dr John Lear, and Medical Genetics Consultant, Professor Gareth Evans, from the Central Manchester University Hospitals. Support for the survey has been provided by Roche Products Ltd.

The results of this survey will help to inform healthcare professionals involved in the management of Gorlin syndrome patients what is working well and where improvements could be made.

A family member, carer or friend may help you complete the survey or they may complete the survey on behalf of someone with Gorlin Syndrome.

Thank you in advance for your participation.

The survey is open and will be run until 3 May 2013

[ninab55]

I think I'm understanding that this survey is for only for UK Gorlins Patients. If I have this wrong I would like to do the survey. My son was diagnosed at about age 9, now 15. We live in Alaska and finding consistent, knowledgeable medical care is a REAL challenge.

[Hidden]

My apologies for the very late response, must have missed it along the way. Yes, the survey was for those in the UK. I'm sure many individuals with Gorlin Syndrome will relate to your comments in relation to finding consistent and knowledgable medical care.