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.
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 the 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 that enhance survival, 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 online support group. You'll need a Facebook account and need to answer a few simples questions to be accepted.
Our group is a closed community so your privacy is assured and nobody from outside the group will see anything you post.
We currently have over 2000 members in our group helping to answer your questions and give support and advice
Lynch Syndrome UK provides free information booklets, leaflets and our new Patient Passport. We can also supply to genetic centres and hospitals on request using the form opposite or you can download the online version of The Beginner's Guide To Lynch Syndrome HERE
You can also email us directly at firstname.lastname@example.org if you have any questions or need some advice and we'll do the best we can to help.
NHS East Genomics has launched a Lynch Syndrome Patient Survey to find out more about your experiences with Lynch Syndrome diagnosis, genetic testing and management.
The survey, which takes around 10-15 minutes to complete, is aimed at anyone with a Lynch syndrome diagnosis living in England.
The survey is fully anonymous, and the results will be used to improve future care and management for Lynch Syndrome patients that meet national guidelines.
Karine Latter, a member of our Patient and Public Voice (PPV) Panel whom herself was diagnosed with Lynch syndrome following a routine bowel screening check, put the survey together in collaboration with our Lynch Syndrome group.
Lynch Syndrome UK
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