Pam Cusick, Senior Vice President of Rare Patient Voice (RPV): Advancing Health Together — Patients, Caregivers, and Researchers

Our guest today is Pam Cusick Senior Vice President of Rare Patient Voice. Rare Patient Voice is a national community that connects patients and caregivers with researchers who genuinely want to learn from their lived experiences. Through this work, RPV ensures that people living with rare and chronic conditions have a direct voice in shaping studies, treatments, and health innovations. Their model is built on trust, respect, and fair compensation, creating a space where stories become data that can drive meaningful change. Pam Cusick is a leader in patient engagement with more than three decades of experience in research design, implementation, and advocacy. As Senior Vice President of Rare Patient Voice (RPV), she works to ensure that patient and caregiver experiences help shape the future of medical research. Beyond RPV, Pam contributes to the advancement of women in healthcare through her work with Women in Research (WIRe), the Healthcare Businesswomen’s Association (HBA), and the International Society for Patient Engagement Professionals (ISPEP). She continues to mentor emerging leaders who share her dedication to connecting patient advocacy with meaningful scientific progress.