Make Your Voices Heard!

Make Your Voices Heard!


*Please Note the Survey is Now Closed as of 1/12/2020

The Gorlin Syndrome Alliance, in partnership with the Gorlin Syndrome Group (UK based), is proud to be part of launching the first ever global Gorlin Syndrome patient community survey. If you are living with Gorlin Syndrome or are a caregiver for someone (young or old) with it, please take the online survey and make your voice heard!

You can access the link HERE.

The survey will take approximately 40 minutes to complete. You will not be able to exit the survey once you start it, so please take it at a time when you can complete it in one sitting.

Did you know that only approximately 0.0037% of the world population has Gorlin syndrome? This is why it is critical to make our voices heard. Once analyzed, the information gained from the survey will provide us with evidence-based data on the burdens of Gorlin Syndrome.

Remember to spread the word to make sure that we have as many people complete the survey as possible.

The survey will be available in the following languages: English, German, French, Italian, Dutch, Russian, Turkish, Portuguese and Mandarin