Watch the Live Stream Here on October 8th!


Click Here to View Agenda

Live Polling

Respond to polling questions in real time!
Go to (link not confirmed)
and make your voice count!

Phone-in Live

Want to talk to us live during the discussion sessions?
Please call 1 703-844-3231 when prompted.
*Due to time restrictions, we may not be able to get to all phone calls.

Submit a Written Comment

If you are a person living with gorlin syndrome or a caregiver, you are invited to answer one or more of the following questions. Please provide specific examples to help us understand your feedback.

Of all the symptoms that you experience (or your loved one experiences) because of gorlin syndrome, what are the 1-3 symptoms that have the most significant impact on quality of life?

How do these symptoms impact specific activities that are important to you?

What are you doing (or what is your loved one doing) to help treat gorlin syndrome, and how well are those treatments working?

What are the most significant downsides to those treatments?