Patients Conference 2020
April 4th, Birmingham

After an emergency meeting held by the trustees of LSUK, it is with a heavy heart that it was decided to postpone our annual conference this year.

This is not a decision that was taken lightly but we feel due to the COVID19, we have so many high-risk patients attending, that is the wise and right decision to take.

We were also faced with the very real risk of speakers pulling out at the last minute which would have made the whole day a disaster for everyone.

We are speaking with the conferencing centre on Monday to attempt to re-arrange but unfortunately, I don’t have that information to hand at this time. Once we have spoken to them, we will, of course, keep our followers updated.


We understand that many will have booked non-refundable hotels and travel. We very strongly suggest you approach these organizations and plead your case for a refund due to exceptional circumstances. For ticket refunds please follow this link below.


Again, we are so sorry the event has been canceled but we were left with no choice


Many thanks
Trustees of LSUK

LSUK was founded in early 2014 by a group of people that met on a social media support group originally set up by the late Janet Norridge. Being frustrated by the lack of information and stories of erratic screening regimes throughout the UK, we came together to change things for people with LS and their families for the better.


We achieved registered charity status, after much hard work, in May 2015. As a charity, we aim to offer support and the latest information to all people with LS. 


We are passionate in our mission to raises awareness both to the medical profession and the general public about this little known genetic condition and in the process helping to save lives.

Mission Statement

Lynch Syndrome UK aims to ensure that for the public benefit, people and their families affected by Lynch Syndrome are provided with support in the form of information, signposting and listening, also to increase public awareness of the syndrome, educating members of the general public and healthcare professionals.


Our vision is that all people affected by Lynch Syndrome in the UK have access to standardised screening, thus enabling prevention of the development of cancer and early diagnosis enabling survival.


Lynch Syndrome UK is an all-volunteer organisation and is founded and governed by Lynch Syndrome survivors and their families. The charity is dedicated toward protecting families and saving lives of those at high risk for a hereditary genetic predisposition to various cancers which often strike at an early age.


If diagnosed early, we believe Lynch Syndrome survivors have positive outcomes which enhance survival, the longevity and quality of life as well as the emotional well-being of those of us who are affected by Lynch Syndrome.


The charity’s aim is to be the leading source of information and support for individuals and families affected by Lynch Syndrome in the UK.


Join us in our very friendly and knowledgeable  Lynch syndrome online support group. All you will need is a Facebook account and to answer a few simple security questions. The group is a closed community so only other group members will be able to read what you post.


We currently have almost 2000 members so you never need to feel alone again

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We provide free booklets and information leaflets. If you would like to receive some then please email with your postal address.

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Registered Address: Linden House. 9/11 Main Street. Ingleton. Carnforth. Lancs. LA6 3EB United Kingdom