Gorlin Syndrome Group is proud to be part of launching the first ever global Gorlin Syndrome patient community survey. We would like to invite everyone living with Gorlin Syndrome, as well as caregivers, to take the online survey and make their voice heard!
The online survey focuses on the burden of Gorlin Syndrome, and covers aspects such as main challenges and concerns, diagnosis, interaction with physicians, and treatment primarily from the perspective of basal cell carcinomas (BCCs). Understanding all the above in a global context will help us as a community to create stronger, evidence-based arguments towards physicians, regulators, payers and policy-makers for them to act on addressing the burden of Gorlin Syndrome.
The survey will be available from mid December 2019 – 1 January 2020 through a link which will be posted on our website and facebook page on the day of the launch.