Anne Marie O’Dowd, Cystinosis Ireland, Cystinosis Network Europe and Worldwide Cystinosis Community Advisory Board
Anne Marie O’Dowd is a founding director in Cystinosis Ireland and chairs the Cystinosis Ireland Research Working Group. She is also chair of Cystinosis Network Europe (CNE), the umbrella group for cystinosis patient organisations in Europe and beyond, and chair of the Worldwide Cystinosis Community Advisory Board (Cystinosis CAB). The Cystinosis 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. For the researcher, engagement with the Cystinosis CAB and the incorporation of the patient perspective will improve the quality of their research studies at all stages from bench to bedside. The Cystinosis CAB aims to be recognised as the world-wide resource of patients-as-experts for cystinosis research.

Anne Marie is the mother of Luke aged 18 with cystinosis who is her inspiration for all of this work.