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Lynch Syndrome Conference 2025: Highlights


This year’s sold out conference was held on International Lynch Syndrome Awareness Day, 22nd March 2025, at the University of Warwick. We brought together clinicians, researchers and people with lived experience to share what’s happening now, and what’s coming next for those of us living with Lynch syndrome. Thank you to all of our amazing speakers and attendees for making it such an engaging and informative event for patients affected by Lynch Syndrome and their families.


Below you’ll find short summaries of each talk, with a link to the YouTube recordings on our YouTube channel, as well as links to additional useful resources at the end.


Adam set the scene: universal tumour testing in colorectal and endometrial cancers, clearer genetics pathways, and a growing national register mean more families are being identified earlier. He highlighted NHS England’s moves to expand testing and cascade to relatives, so people can join surveillance sooner.

Sources: NICE NHS England


Kevin walked through the new, world-first NHS England programme inviting people with Lynch for bowel surveillance every two years, plus quality markers that matter (prep quality, withdrawal time, polyp detection). He looked ahead to tools that could further improve detection.

Sources: NHS England


Nicky’s practical session covered split-dose prep, low-fibre diet the day before, clear instructions, and staying well-hydrated, small steps that make a big difference to comfort and colonoscopy quality.


David shared steady progress toward a preventive vaccine program designed specifically for people with Lynch, with strong community involvement and clear next steps towards early trials.


A guided tour of the NHS-aligned Lynch Syndrome app—bringing a patient-held record, reminders and trusted information into one place, developed with LSUK and NHS partners.


Emma Jenkins, Dr Dimitra Repan, Poppy Cohen & Sarina Shah - NHS South East Genomic Medicine Service

A multi-voice session sharing what’s going well and what must improve, communication, coordination, and equitable access, drawing on patient surveys and service experience.


Valerie showed how co-design with patients makes leaflets clearer and more useful, plain language, consistent messages, and formats people actually use.


The team unpacked benefits (peer connection, practical tips) and pitfalls (misinformation, privacy), and how charities like LSUK can amplify evidence-based content.


Helen described UCLH’s Lynch Surveillance Hub: joined-up counselling, invitations and surveillance under one roof, an approach others can learn from.

Sources: uclh.nhs.uk


From surgery to screening: how GPs and research nurses can spot red flags, trigger testing, and support people after diagnosis, building on quality-improvement work in NHS services.


Kelly shared the Lynch Choices website and practical ideas for introducing the decision aids in clinic so people can weigh options like aspirin or preventative surgery. canchoose.org.uk


Neil reviewed current surveillance realities and where evidence is changing, including counselling on symptom awareness and targeted strategies for gene-specific risk.


A compassionate, clear guide to menstrual health, contraception, fertility and menopause care for people with Lynch—how choices shift by age, plans and personal values.


Liz outlined what’s known about risk (especially in MSH2/MSH6), how research is shaping earlier detection, and the balanced conversation around PSA and shared decisions. PMC


A state-of-the-art tour for dMMR/MSI-H cancers: first-line pembrolizumab in metastatic colorectal cancer, options in endometrial cancer, and how decisions are individualised.


Rebecca reviewed emerging research (including utDNA and other urine biomarkers) and what robust trials will need to show before routine use.

Sources: SSRN


Sir John summarised the CaPP journey and new CaPP3 results showing that low-dose aspirin can reduce bowel cancer risk in Lynch, evidence that could simplify prescribing.


Explore more:

  • Lynch Choices decision aids (aspirin and surgery) — designed for shared decisions with your team. canchoose.org.uk

  • NICE patient decision aid on aspirin — evidence, pros and cons to discuss. NICE

  • LSUK support — information centre, Patient Passport and peer support. Lynch Syndrome UK


If you missed this year's Lynch Syndrome UK Conference you can watch all the recordings on our YouTube channel. Follow us on our social channels, or sign up for our newsletter, for announcements about the Lynch Syndrome Conference planned for March 2026.


Disclaimer: This blog is for general information only and isn’t a substitute for medical advice. Please speak to your clinical team about your own care.

 
 
 

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