Director of Membership Services, National Organization for Rare Disorders (NORD®)
Debbie serves as the Director of Membership at the National Organization for Rare Disorders (NORD®). In this role, she oversees NORD’s membership programs, which support the collective and individual needs of rare disease patient organizations, patients, and advocates through education, research, advocacy and mentorship. She brings over 22 years of leadership in nonprofit public health education, awareness and advocacy to the organization.
Prior to joining NORD, Debbie spent 13 years with the Pulmonary Hypertension Association, a NORD member organization. During that time, she led the growth of the organization’s network of support groups from 80 to nearly 300, developed new services personalized to the diversity of patients and caregivers, and convened the largest gathering of pulmonary hypertension patients in history.
Debbie has represented the patient perspective on several national platforms, including as a guest on National Public Radio’s Kojo Nnamdi Show. She has served as a member of the board of trustees of the American Thoracic Society, a 115-year-old medical society with a global membership of 16,000 pulmonologists, critical care and sleep disorder researchers, clinicians and other medical professionals. An accomplished public speaker, she has presented extensively at colleges and universities on women’s health issues, delivered speeches on caregiving across the country, including at Johns Hopkins University events, and moderated panels at the World Orphan Drug Congress European and American meetings.
Debbie is a graduate of the University of California, Irvine, and the University of Kent. Her dedication to the rare disease community is rooted in a deeply personal connection. She was inspired to enter the field after her older sister, Alex, was diagnosed with pulmonary hypertension.