Amanda is a vice chair of Whittington Health NHS Trust and an associate non-executive director of Royal Free London NHS Foundation Trust. She has extensive experience of lay involvement and governance within the NHS and public sector, having been a governor of UCLH NHS Foundation Trust for nine years, where she continues to chair both the trust’s Organ Donation Committee and the UCL/UCLH Biobank Ethical Review Committee. She was a Member of the Human Tissue Authority from 2014 to 2021 and a member of the UK Donation Ethics Committee until it was wound up in 2016. She is a lay member of NHS Blood and Transplant’s National Organ Donation Committee and chair of the steering committee for the UK CRC Tissue Directory and Co-ordination Centre as well as a trustee of various charities and a magistrate.
It is heart breaking for people who are diagnosed with rare cancers to discover how little research is being done to drive new treatments for their conditions, for which the survival statistics are often bleak. At the same time researchers are frustrated: they tell us that they want to work on rare cancers but are unable to put together meaningful cohorts of patients to be able to attract funding and conduct the research.
I am really excited to be involved in RareCan as it offers a compelling solution to this needless dilemma, a way to bridge the gap between the patient and research communities, which is holding back the possibility of progress. I am honoured to be part of this initiative because of the incredible level of personal commitment to improving outcomes for cancer patients that everyone in the RareCan team has. The enterprise is so much more than just a job for us all – it is a mission.