Professor Maya Doyle, Associate Professor of Social Work, School of Health Sciences & Clinical Assistant
Maya Doyle (MSW, PhD) is a social worker, educator, and rare disease researcher-advocate who lives in New York and teaches at Quinnipiac University in Connecticut, USA. She has been working with the cystinosis community since meeting her first transplant patient n 1999. Maya completed her doctoral work with a study on emerging adulthood and healthcare transitioning with cystinosis, which was awarded the Best Dissertation award in 2014 by the Society for Social Work and Research. As a qualitative researcher, she strives to amplify the voice and lived experience of patients and families with rare and chronic illness. She has been a speaker at many kidney, rare disease, and cystinosis meetings; helped to create educational resources for caregivers and patients; and hosted transitioning workshops for teens and their parents. As part of the Adult Care Excellence Initiative, she helped to create a worldwide survey about the concerns of adults with cystinosis which helped to motivate a study related to myopathy. Maya is a professional advisor to the Cystinosis Research Network and is thrilled to play a supporting role for the Adult Leadership Advisory Board.