Page 1: Letter of invitation

Dear Participant,

The aim of this study is to see if social support has an impact on quality of life.  We hope to get a better understanding of your experience of living with a rare genetic skin condition. 

The next page is a participant information page which includes more details about this on-line survey.

If you agree to take part, you will be asked to give your consent and to confirm that you are an adult over the age of 18 years.

After completing the on-line survey, you will be invited to participate in a telephone interview.

If you do not want to complete the survey and only want to be interviewed,  please email the lead resercher:

Sondra Butterworth

PhD Research Student

Faculty of Health & Social Care

University of Chester

Riverside Building

Castle Drive Chester CH1 1SL