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Julie Breneiser is the Associate Director of the Gorlin Syndrome Alliance (GSA). Prior to this, she was Executive Director for five years, and President of the Board of Directors. Her early career began as a Physician Assistant.
Julie and her two young adult children are affected with Gorlin syndrome, a rare genetic disorder caused by a tumor suppressant mutation that can affect every organ system.
The work that Julie does with the GSA focuses on collaboration with industry to bring potential treatments to clinical trial. Under her leadership, the GSA conducted a Listening Session (2020) and an Externally Led- Patient Focused Drug Development meeting (2021) for the FDA and interested industry. In November of 2021, Julie was honored with an appointment to the Patient Engagement Collaborative at the FDA. She previously served as a consumer reviewer for the National Institutes of Health (NIH) and the Department of Defense’s Congressionally Directed Medical Research Programs (DOD-CDMRP). Julie speaks nationally and internationally, raising awareness of Gorlin syndrome and the burdens of this multi-system disorder as well as advancing drug development for rare diseases.