Dr. Charles Steward, Board Member
Dr. Charles Steward is an internationally renowned patient advocate and genome scientist. He has around 28 years’ experience working with the human genome and rare diseases on the Wellcome Genome Campus, Cambridge,UK. Dr. Steward spent 22 years at the Wellcome Sanger Insititute, which is where he did his PhD and has co-authored numerous publications including at least 20 in Nature journals. Dr Steward led the initial human chromosome 10 analysis, published in Nature (Deloukas et al., 2004) and led an international collaboration investigating the genomic basis of developmental and epileptic encephalopathies, published in npj Genomic Medicine (Steward et al., 2019). He has taught extensively about the human genome both in the UK at Cambridge University and internationally with the Wellcome Trust, particularly in low to middle income countries, such as India, Kenya, Malawi, South Africa, Thailand, Uruguay and Vietnam. Dr. Steward is a scientific and patient advocacy advisor to numerous groups and is on the Governance Council for the International Cerebral Palsy Genomics Consortium. He is currently the Patient Advocacy and Engagement Lead at Congenica UK, a digital healthcare company that investigates the genomic basis of people with rare diseases. Dr. Steward is also the father of two children with severe neurological disorders who have been through numerous UK-based genomic studies, including the 100000 Genomes Project. He is currently a member of Genomics England’s Participant Panel as well as the USA-based Simons Searchlight participant panel. He is passionate about how patient advocacy and engagement can drive positive change for people, families and caregivers affected by rare genetic disorders.