Director of Membership Services
National Organization for Rare Disorders (NORD)
As the Director of Membership, Debbie is responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations, patients, and patient advocates through education, research, advocacy, and mentorship. Debbie joined NORD in March with more than 18 years of nonprofit experience in public health education, awareness and advocacy.
Debbie has been in the rare disease community since 1998. Her older sister Alex was diagnosed with a rare, life-threatening, cardio-pulmonary disease, Idiopathic Pulmonary Hypertension. Since her diagnosis, Debbie has been by her sister’s side as a caregiver the entire time. Prior to working at NORD, Debbie spent nearly the last 13 years as Director of Patient Programs at the Pulmonary Hypertension Association, a NORD Member Organization. She worked and managed the community of pulmonary hypertension patients and caregivers through a national network of support groups and through virtual support.