Carl Lander
Research Director
Carl is a Registered Nurse living with pyruvate kinase deficiency, a rare anemia that is one of the inherited metabolic disorders. He had a career in the National Health Service across a range of disciplines and roles, and has drawn on a wealth of his own and others lived experiences.
Carl is Co-Chair of Metabolic Support UK and the Research Director with the Pyruvate Kinase Deficiency International Alliance, based in the USA. As a long-standing Peak Registry steering committee member (a global registry of data for those with pyruvate kinase deficiency), has co-authored several papers discussing the impacts of this disorder.
Carl is passionate about advocating for an improved lived experience for people with a rare disease and their careers. His key interests are using evidence and data to support advocacy and helping people use that information to seek the care they require.
Carl is currently studying for a PhD in Business Management, where he is exploring the use of patient-reported outcome measures in Inherited Metabolic Disorders. This work is building upon his MSc in Advanced Health and Care Management, focusing on Value-Based Healthcare. He strongly believes that VBHC can transform healthcare systems to bring about better outcomes for people.
