In the survey we carried out in July, we found that although most people with Gorlin Syndrome use sun screen and wear a hat, not everybody did. We’d like to find out more about why people don’t always protect themselves. For example, is the cost of using sun screen too much or do people find it hard to find hats which fit well and look ok? The information might help us argue for practical changes, for example, sun screen on prescription and sun hats for people with large heads.
This second survey takes just over five minutes to do, is confidential (no identifying data are stored) and we’ll make the results public at the Patient Conference and AGM in October. You have to be over 18 to do the survey and only be doing it for yourself. However, each family member can do the survey. To go to the survey click
Thank you in advance for your participation.