Anne Marie O’Dowd is a director of Cystinosis Ireland and chairs the Research Working Group. She is the mother of an adult with cystinosis.  Anne Marie chairs Cystinosis Network Europe (CNE), the umbrella group for patient organisations in Europe and beyond and she is also chair of the Worldwide Cystinosis Community Advisory Board (CAB). CAB engages with researchers and pharmaceutical companies to provide advice and information for research and clinical trials to ensure the perspective of those living with cystinosis and their families is embedded in all research. Engagement with CABs improves the quality of studies, improves recruitment and retention in clinical trials and provides the resource of patients-as-experts at all research stages.