Roberta Smith

Roberta is President of the Alagille Syndrome Alliance, a Nuclear Medicine Technologist, Small Business and Nonprofit Consultant, and mom to 18-year-old twins. She is passionate about and focused on elevating the patient voice, providing opportunities and facilitating meaningful connections in the rare disease space, and is deeply involved in the rare disease community as a parent to a daughter with a rare disease and as a leading rare disease nonprofit leader. Roberta is currently working on her MS in Organizational Leadership and has worked alongside pharma and industry partners in drug development, clinical trials, drug trials, research initiatives, non-profit revitalization and start-ups, mentorships, and more.