The Phelan-McDermid Syndrome Foundation was a co-planning partner for the Externally-Led Patient Focused Drug Development (EL-PFDD) meeting in November of 2022. The meeting was modeled after the work of the FDA’s Patient Focused Drug Development (PFDD) initiative. PFDD is a systematic way of gathering patient perspectives on their condition and on available treatments. The information gathered at the meeting is presented in this Voice of the Patient report, a high-level summary of the perspectives generously shared by the families and caregivers of individuals living with PMS. The report also includes selected patient comments that were submitted through an online portal.