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Helen White

PPI Collaborator

  • Experience: Endometrial (Womb) Cancer

Helen’s Experience

I was diagnosed with endometrial (womb) cancer in 2017, at which point I was offered the opportunity to join the 100,000 Genomes Project. This experience led me to become a member of the Participant Panel at Genomics England in 2018. During this time, I also discovered that I have Lynch syndrome, a genetic condition that increases my risk of developing bowel and other cancers.

Experience with Cancer Research

Since joining the Participant Panel, I have been actively involved in a wide range of public and patient involvement (PPI) activities, with a focus on cancer prevention, early detection, and treatment. I am a member of the CanGene-CanVar Patient Reference Panel and the Cancer Research Advocates Forum, UK (formerly the NCRI Advocates Forum). In 2023, I was honoured to be appointed Vice-Chair for Cancer on the Participant Panel.

Recognising the need for greater PPI in womb cancer research, I partnered  with Peaches Womb Cancer Trust in 2021 to establish and lead Peaches Patient Voices. This initiative connects people with lived experience of womb cancer with researchers - ensuring that research aligns with the real priorities and concerns of those affected.

I am deeply committed to making sure that research reflects the needs of those impacted by or at risk of cancer. One of the most meaningful projects I’ve been involved in is LynchVax, which aims to prevent cancer in people with Lynch syndrome. Contributing to research that has the potential to protect future generations from cancer is something I’m incredibly proud of.