Carl Lander
RN, MSc. (Advanced Health and Care Management), Director of Research, Pyruvate Kinase Deficiency International Alliance.
Having been diagnosed with a rare form of anaemia (Pyruvate Kinase Deficiency) at the age of four, Carl has experienced a wide range of treatments over the years. Having spent his career in nursing and health service management. He is passionate about advocating for the lived experience of people with a rare disease and their carers.
As Research Director of Pyruvate Kinase Deficiency International Alliance and supports the PK deficiency community to use evidence for advocacy. Carl is currently undertaking a PhD with Swansea University to explore the use of patient reported outcome measures in inherited metabolic disorders.
