Lynch Syndrome UK was founded in early 2014 by a group of people who met on a social media support group. Being frustrated by the lack of information and stories of erratic screening regimes throughout the UK, they came together to change things for the better for people with Lynch Syndrome (LS) and their families. […]
Stefania Vicari is a Professor in Digital Media and Society at Loughborough University (UK). Her research focuses on digital participation and social change, especially in the context of lived experiences of health and illness. She recently led Previvorship in the Platform Society, a three year project funded by the Leverhulme Trust exploring how hereditary cancer […]
National Hereditary Breast Cancer Helpline was founded in 1996 by Wendy Watson MBE. The aim of the helpline is to ensure that those worried about their genetic risk of cancer had access to full information on all the options currently available, referrals where appropriate, and full peer support for whatever option was chosen. Most importantly, […]
The Eve Appeal is the UK’s leading gynaecological cancer charity. Their aim is to prevent gynae cancers from developing in the first place, but if they do develop, they want to make sure they are detected early so more people survive their diagnoses. They work to educate people about gynae health and increase awareness of […]
Peaches Womb Cancer Trust was founded in September 2020 by a team of medical professionals who all have a particular interest in womb cancer and research. The aim of the trust is to preserve the health and improve the experience of those with, or at risk of, womb cancer, also known as endometrial and uterine […]
Julian Barwell is a Consultant Clinical Geneticist at the University Hospital of Leicester and has an honorary professorship in genomic medicine at the University of Leicester. He was the rare disease lead for the 100,000 Genome Project in Leicester and chaired the Public and Patient Involvement group for the East of England Genomics Medicine Centre. He […]
Kelly Kohut is a Consultant Genetic Counsellor and clinical researcher with a focus on translating genomic knowledge to improve patient communication, experiences and outcomes.Kelly has a background spanning clinical genetics, education, patient and public engagement and interdisciplinary research. Kelly’s work explores the ethical, psychological, and practical dimensions of genetic testing, with particular interest in supporting […]
Mike Thelwall is a Professor of Data Science at the University of Sheffield (UK). He researches sentiment analysis, science of science, and social web analysis methods. He has created software and methods for analysing Reddit, YouTube, and TikTok from a quantitative social science perspective. His main current book is Word association thematic analysis: A social […]
Terri McVeigh is a Consultant Clinical Geneticist at the Royal Marsden NHS Foundation Trust, with clinician–scientist training across Ireland, the UK, the United States and Australia. Her work spans genomic medicine, education and national service development. She contributes to NHS England’s Genomics Education Programme, and serves as a Professional Lead for Technology-Enhanced Learning within the […]
Kate Weiner is a Senior Lecturer in Sociology at the University of Sheffield (UK). Kate works at the intersection of sociology of health and illness and social studies of science and technology. She has an enduring interest in how people understand health and illness, in everyday health practices, and how these intersect with health care […]