Julie Breneiser is the Executive Director of the Gorlin Syndrome Alliance (GSA). Prior to her position as director, Julie served as volunteer Board President for the GSA. She 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. Her early career began as a Physician Assistant followed by teaching preschoolers with disabilities.
The work that Julie does with the GSA focuses on collaboration with industry to bring new and/or potential treatments to clinical trial. She also provides individual support to affected patients and their caregivers along with educating health care providers about this rare disease. In November of 2021, Julie was honored with an appointment to the Patient Engagement Collaborative at the FDA. This group of patients and advocates works to achieve more meaningful patient engagement in medical product development and other regulatory discussions at the FDA. Julie previously served as a consumer reviewer for the National Institutes of Health and the Department of Defense’s Congressionally Directed Medical Research Program. She speaks nationally and internationally raising awareness of Gorlin syndrome.