Lemuel Pelentsov is Program Director for the Bachelor of Nursing (Theory), University of South Australia. Since his eldest son’s diagnosis of a rare disease in 2008, Dr Pelentsov has been a passionate nurse-researcher investigating the support needs of parents and families with rare diseases. In his PhD, he developed the Parental Needs Scale for Rare Diseases (PNS-RD) – a tool which is now being used by researchers and clinicians in numerous countries. He has multiple publications and has presented his research at numerous national (Australian) and international conferences.