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Gorlin Syndrome Group

Supporting patients, their families and carers
 
Registered Charity No: 1096361
Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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Changing Faces Survey

Changing Faces aims to support and represent the interests of people of all ages who have disfigurements. To do this well they need to find out what life is really like for people with facial (and body) disfigurements and have circulated a number of organisations for assistance with their latest research. 

Changing Faces is calling on people to take part in this survey, the biggest that has ever been carried out in the UK to find out what it is really like for people with disfigurements at secondary school and at work. Your views will give the charity the evidence it needs to make teachers, employers and policy makers in the government aware of the way that secondary school pupils and employees with disfigurements are treated.

Changing Faces is currently conducting some important research on people with disfigurements or with conditions that affects the way they look, in employment and education via a questionnaire, and we would be grateful for your help. We are seeking the opinions and experiences of people with any kind of disfigurement to any part of the body. The results will help us to develop our work in schools and employment, representing the needs of people with disfigurements, especially in our policy work to campaign for better provision. The more responses we get, the more useful and effective the resulting findings will be.

Schools
We would like to reach children and young people with a difference or disfigurement between 11 and 20 years, to find out from them how they experience (or have experienced) their school or sixth form college. The results will  help us to ensure that teachers and school staff gain the skills and expertise they need, both to support individual pupils effectively, and also to ensure that all  children and young people in secondary schools learn about difference and disfigurement in ways which are positive for everyone.

Employment
We want to hear from anyone who is of working age or has worked in the past to find out from them their experiences in getting work, from a Saturday job to being a manager, whether employed or unemployed. If they are unemployed, we would be interested to find out why not. The findings will enable us to develop appropriate support for individuals to have the confidence to achieve their career goals, and to offer advice to employers on developing best practice and encourage them to employ more people with disfigurements.

You can help by encouraging your members to complete the questionnaire.
 
This can be done by e-form at: Changing Faces
 

 
 
 
 
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.