New NHS-backed Lynch Syndrome App launched

There’s welcome news for our Lynch community: a new NHS-backed mobile app has launched to help the 175,000 people with Lynch syndrome in the UK monitor and manage their health, together with their clinical teams. Led by the University of Leicester with patient partners from Lynch Syndrome UK, NHS East Genomics and app developer Instant Access Medical, the app brings trusted information and practical tools into one easy place on your phone.

Why this matters

Lynch syndrome is an inherited condition that raises the risk of several cancers, often at younger ages. Yet awareness remains low. In England, only around 10,000 people are currently on a Lynch syndrome register, while population studies suggest about 1 in 400 people, roughly 175,000, may have Lynch. Improving identification, screening and day-to-day support is therefore vital, and digital resources like this app can help close the gap.

What the app offers

The app offers a clear, patient-friendly clinical dashboard designed to guide conversations with your GP, genetics service, and hospital teams. It summarises key facts about Lynch syndrome, includes symptom checkers, and signposts to reliable sources of further help, reducing the need to search across multiple sites and giving you prompts to raise at your next appointment.

Built with (and for) people with Lynch

From the outset, people living with Lynch syndrome. including trustees and volunteers from Lynch Syndrome UK, were involved in shaping the content and features. That collaboration shows: the tone is practical and reassuring, the explanations avoid jargon, and the focus is firmly on supporting real-world decisions and shared care. Julien Barwell, Consultant Cancer Geneticist at University Hospitals of Leicester and Professor in Genomic Medicine in the Department of Genetics and Genome Biology at the University of Leicester, the lead clinician behind the project describes it as part of a wider move toward truly personalised medicine, linking genomic results to day-to-day care so that the right screening and treatments can be offered at the right time.

How to get the app

The app is available now on the App Store and Google Play. After download, you’ll be asked to request an access code; the app explains how to do this step-by-step. This approach helps ensure the resource is used within NHS pathways, alongside advice from your clinical team.

How it fits with LSUK resources

At Lynch Syndrome UK, we champion tools that make life with Lynch a little clearer and easier. This app complements our closed support group, website, and educational materials by giving you a handy, NHS-aligned companion for appointments and everyday questions. Use it to prepare for discussions about screening schedules, symptoms, family communication and more, and bring it to clinic so choices can be made with your team, not on your own.

We’re proud that members of our community helped shape this project, and we’ll keep sharing updates as it evolves. For now, if you or a family member live with Lynch syndrome, this is a simple, credible way to keep key information close at hand and make the most of every healthcare interaction.

If you missed this year's Lynch Syndrome UK Conference, watch the recording of Prof Julian Barwell, Lead Clinician, Dr Stan Shepherd, CEO at Instant Access Medical, and Megan Hopkinson presenting the Lynch Syndrome App and sharing the app user research results on our YouTube channel.

Sources: East Genomics announcement (7 October 2024) and University of Leicester news release (15 October 2024). (East Genomics, University of Leicester, IAM – Instant Access Medical)