Graham was elected to the Board of Directors of EURORDIS in 2023.
He is now retired after working in 35 years as an IT Executive and Program Director in the Aerospace and IT industries.
In 1953 he was born with esophageal atresia (EA); this is a congenital malformation affecting around 1 in 3500 live births, and he is amongst the earliest survivors of this condition.
In 2008 Graham became a Board member of TOFS (the UK EA patient group) and he leads TOFS’ engagement with medical professionals and researchers. In 2011, he led the founding of EAT (Esophageal ATresia Global Support Groups e.V), the international federation of EA patient groups which is based in Stuttgart. Graham was its Chair for ten years, and continues to support the federation as its Special Patient Advisor. He has worked closely with INoEA, an international multi-disciplinary group of medical professionals with a special interest in EA and has been a presenter and/or moderator at each of their international EA conferences.
In 2017 he became Lead ePAG for ERN-ERNICA, and as a member of the EURORDIS ePAG steering group he has been particularly active in supporting initiatives to improve patient-clinician engagement; currently he is supporting the development of the EURORDIS Patient Partnership Framework. From 2019-2021 Graham also served on the Rare 2030 panel of experts. In September 2023, he stepped down as Lead ePAG for ERN-ERNICA and became ERNICA ePAG focused on Transition & Adult Care.
In January 2021 Graham was appointed a ‘Public and Patient Voice’ partner on the National Health Service of England’s Clinical Reference Group for specialised surgery in children, which provides specific knowledge and expertise to advise NHS England on the best ways that this specialised service should be provided.
Graham is a passionate advocate for promoting patient representatives as equal and irreplaceable partners with clinicians and researchers in the pursuit of improved treatments and the delivery of improved long-term patient outcomes.