In late 2019 and early 2020, the Gorlin Syndrome Alliance, in conjunction with the Gorlin Syndrome Group (UK), conducted the first ever Gorlin syndrome global community survey. There were 246 respondents, including 32 parents or caregivers of individuals under the age of 18.
The results of this first-of-its-kind survey were used as the foundation of the Patient Impact Report (PIR), a comprehensive, patient experience-centered, data-driven document that describes the impact of life with Gorlin syndrome. The PIR is a mechanism to leverage our own voice and our vast collective experience with this rare disease to educate physicians, families, researchers, and government regulators. The findings will also be presented in future publications, conferences, and congresses including the American Academy of Dermatology (AAD) and the European Academy of Dermatology and Venereology (EADV).
This report is available upon request by submitting this form to the Gorlin Syndrome Alliance.