We have put together this list of external websites and support groups to help patients, families, and friends find extra information and support for polyposis syndromes. While we take care to ensure the information on our website is accurate and trustworthy, we cannot control the content of external sites. These links are provided for your convenience, and we encourage you to discuss any medical advice or guidance you find with your healthcare team.
If you know of other helpful resources or support groups, we would love to hear from you — please get in touch so we can consider adding them to this page and help more people in our community.
SUPPORT & MEDICAL RESOURCES
IOSSG: Inside Out Stoma Support Group
Offers support, advice, and friendship to anyone living with a stoma, as well as their families and carers. The group provides a welcoming space to share experiences and practical tips for living confidently after stoma surgery.
Polyposis App
Part funded with money raised by Polyposis Patient, and created by St Marks, the Polyposis App can help your GP or clinicians to understand diagnosis and treatment options for your polyposis syndrome.
St Mark’s Hospital – The National Centre for Bowel Disease
A leading UK centre specializing in the diagnosis and treatment of bowel diseases, including polyposis syndromes. They offer comprehensive care and are home to the Polyposis Registry.
St Marks is a centre of excellence for polyposis syndromes and you can contact the St Mark’s Centre For Familial Intestinal Cancer (SMCFIC) [https://www.stmarkshospital.nhs.uk/services-a-z/centre-for-familial-cancer/] by calling 020 8453 2656 (during office hours) or emailing is LNWH-tr.SMCFIC@nhs.net.
This service is located at:
The St Mark’s Centre for Familial Intestinal Cancer
St Mark’s Hospital
Central Middlesex
Acton Lane
Park Royal
London
NW10 7NS
St Mark’s Polyposis Registry
A national resource for individuals with polyposis syndromes, providing information on diagnosis, management, and research opportunities.
CANCER & GENETIC SUPPORT
Bowel Cancer UK
A leading UK charity focused on bowel cancer, offering support, information, and funding for research into the disease.
Genetic Alliance UK
A national charity representing over 200 patient organizations, advocating for individuals affected by genetic conditions, including polyposis syndromes.
Macmillan Cancer Support
Provides comprehensive support for people affected by cancer, including information on diagnosis, treatment, and living with cancer.
NORD – National Organization for Rare Disorders
NORD is a US-based organization that supports people living with rare conditions, including polyposis syndromes. Their website provides information on rare diseases, research, and patient advocacy.
RDCN – The Rare Disease Collaborative Network
The RDCN is a group of specialist NHS centres across the UK that work together to provide expert care, support, and advice for people with hereditary polyposis syndromes.
NHS SUPPORT
Healthwatch
Healthwatch is the independent national champion for people using health and social care services in England. They listen to patient experiences and use this feedback to help improve NHS services and care in local communities.
Patient Advice and Liaison Service
The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.
Patient Association
The Patients Association is an independent UK charity that amplifies the patient voice in health and social care. It provides information and support, runs a free helpline, and works with patients, the NHS, and policymakers to improve services and ensure care is shaped by patient needs.
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