The intent of the PFDD movement is to ensure that the FDA understands the perspectives of individuals and caregivers living with certain disorders and keeps those in mind when reviewing prospective treatments. We want and need the FDA to understand the experiences of people with Gorlin syndrome, including the manifestations, limitations it places on daily activities of life, the social frustrations, and the emotional pain. Simply put, we want FDA officials to experience days in our lives, and to walk away with an understanding of what we want to see in future treatments for Gorlin syndrome. This includes giving the FDA meaningful insights into the level of risks we would be willing to accept in exchange for potential benefits in treatments as well as what treatment outcomes matter most to us. This meeting provides a unique forum to help achieve this objective.