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Dr Charles Steward

Participant Panel member

Dr Charles Steward is the Patient Advocacy and Engagement Lead at Congenica, a digital health company that assists clinicians and researchers to rapidly understand the genetic basis of rare diseases. He has around 28 years’ experience working with the human genome on the Wellcome Genome Campus in Cambridge.

Besides sitting on the Participant Panel, he is involved in several other charities, trusts, and organisations focused on genetics and rare disease.

More importantly, however, Dr Steward is a carer for his two young children both of whom have severe neurological disorders. He, his wife, and children have had their genomes sequenced through different genome studies in the UK, including the Deciphering Developmental Disorders study, the 100,000 Genomes Project, and the Next Generation Children study at Cambridge University but nothing has yet been found to explain their challenges. He is passionate about the impact that patient advocacy and engagement and genomics can have in bringing about positive change for the patient, their families, and caregivers.

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