Patient Support Groups

This is an alphabetical list of organisations which provide support and information for patients, their families and their carers affected by disorders of the digestive tract.

Click on the organisation's web link for more information including contact details.

If you would like to nominate an organisation to be listed here please contact Dr. Sarkar.

A / B / C / D / E / F / G / H / I / J / K / L / M / N / O / P / Q / R / S / T / U / V / W / X / Y / Z

The Royal Liverpool and Broadgreen University Hospitals NHS Trust is not responsible for the contents or the reliability of the linked external websites and does not necessarily endorse the views expressed within them. Listing should not be taken as endorsement of any kind.


A


Action on Addiction
An independent UK research charity dedicated to finding ways to prevent and treat nicotine, alcohol and drug abuse. The charity is mainly funded by the general public & funds research at the National Addication Centre.
www.actiononaddiction.org.uk


Addiction Related Websites 
Addiction / Substance misuse related websites:-


Alcoholics Anonymous (AA)
A worldwide informal society of men and women who share a desire to stop drinking alcohol. Personal anonymity is assured.
www.alcoholics-anonymous.org.uk


Alpha-1 UK  
An on-line mailing list to make contact with other people living with alpha-1-antitrypsin deficiency in the UK.
www.alpha-1.org.uk


Artificial Nutrition
Patients on Intravenous and Nasogastric Nutritional Therapy (PINNT) www.pinnt.com

Providers of homecare artificial nutrition:- 

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B


Barrett’s Oesophagus Foundation
A national charity dedicated to Barrett’s Oesophagus which has a patient support group for sufferers and their families (see PROBE).
www.barrettsfoundation.org.uk
www.barrettsfoundation.org.uk/probe


Beating Bowel Cancer
A charity for bowel cancer patients, working to raise awareness of symptoms, promote early diagnosis and encourage open access to treatment choice for those affected by bowel cancer.
www.bowelcancer.org


Bladder & Bowel Foundation
The UK’s leading charity providing information and support for people with bladder and bowel disorders their carers and families. Faecal incontinence, Diverticular Disease and Neurogenic Bowel Disorders are covered in detail.
www.bladderandbowelfoundation.org


Bowel Cancer Screening Programme (BCSP)
Comprehensive overview of the NHS Bowel Cancer Screening Programme (BCSP)
www.cancerscreening.nhs.uk/bowel/index.html


Bowel Cancer UK
A national charity for bowel cancer which aims to save lives by raising awareness, campaigning for best treatment and providing practical support and advice
www.bowelcanceruk.org.uk


British Liver Trust
A national charity which aims to inform, support and advise people on all aspects of liver disease.
www.britishlivertrust.org.uk/home.aspx


British Porphyria Association
An association which seeks to promote greater understanding of the condition amongst both healthcare professionals and the public.
www.porphyria.org.uk

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C


Calea UK Limited
A private company who work in partnership with healthcare professionals to provide quality tailored artificial nutrition packages in the privacy and comfort of your own home.
www.calea.co.uk  


Cancer Websites
General cancer related websites:

Specialist cancer websites:


Cancer Back Up
Macmillan affiliated website providing up to date information on all cancers as well as practical advice and support for cancer patients, their families and carers.
www.cancerbackup.org.uk/Home


Cancer Research UK
Cancer Research UK is the largest charity in the UK. It is dedicated to research on the causes, treatment and prevention of cancer and also provides a wealth of information for patients and their families.
www.cancerresearchuk.org


Children’s Liver Disease Foundation (CLDF)
This group provides emotional support to children and families affected by liver disease and funds medical research.
www.childliverdisease.org


Clinovia
Providers of specialist home healthcare services for patients with long-term medical conditions including those on artificial nutrition.
www.clinovia.co.uk


Coeliac UK
A charity for people with coeliac disease and dematitis herpetiformis which aims to improve the lives of people living with the condition. They provide information to help sufferers manage their diet and research new treatments.
www.coeliac.org.uk


Colostomy Association
A charity which provides support, reassurance and practical information to anyone who may be about to have, or already has a colostomy. Support and advice is also provided for families and carers both before and after surgery.
www.colostomyassociation.org.uk 


CORE
CORE aims to fund research to prevent, cure or treat digestive disorders, provide information for sufferers, their families and friends and increase the knowledge of the symptoms of digestive disorders. A wide range of patient information leaflets are available.
www.corecharity.org.uk
www.corecharity.org.uk/Information.html


Crohn’s Disease Websites


Crohn’s Organisation
A website resource for the management of Crohn’s Disease and Ulcerative Colitis designed to help both patients and healthcare professionals.
www.crohns.org.uk


Cyclical Vomiting Syndrome Association (CVSA) UK
A registered charity providing information and supporting sufferers and their families affected by Cyclical Vomiting Syndrome.
www.cvsa.org.uk

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D


Daily Strength
The largest health network of people sharing their treatment experiences and offering support for a multitude of medical problems (including non-alcoholic fatty liver disease).
www.dailystrength.org
www.dailystrength.org/c/Fatty-Liver-Disease/support-group

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Diverticular Disease - Including Diverticulitis

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E


The Eosinophilic Disease Society (TEDS)
To provide support and the sharing of information to sufferers of gastrointestinal eosinophilic diseases
www.theeds.org.uk

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F


Familial Adenomatous Polyposis (FAP) Websites


FAP Gene
GeneA comprehensive patient run site dedicated to Familial Adenomatous Polyposis (FAP)
www.fapgene.org.uk

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G


Gastro-oesophageal Reflux Disease (GORD) Websites
Living With Reflux 
www.livingwithreflux.org


Gut Trust
A self-help organisation which is the only charity in the UK dedicated to supporting people with Irritable Bowel Syndrome (IBS). Provides a free telephone helpline, staffed by specialist
www.theguttrust.org

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H


Haemochromatosis Society UK
Provides help, support and information for those affected by this genetic iron overload disorder.
www.haemochromatosis.org.uk


Hepatitis B Foundation UK
Raises awareness of hepatitis B, offers advice and support to patients and their carers, and campaigns on issues of interest to hepatitis B sufferers and workers.
www.hepb.org.uk


Hepatitis C Centre
The UK Hepatitis C Resource Centre (UKHCRC) aims to provide information, support and advice to patients as well as healthcare professionals.
www.hepccentre.org.uk


Hepatitis C Trust
Provides support, information and representation for people with Hepatitis C and also raises awareness of the disease.
www.hepctrust.org.uk


Hospital To Home (H2H)
The Abbott Nutrition Hospital to Home (H2H) service is designed to help make the move from tube feeding in hospital to tube feeding at home or in the community easier.
www.abbottnutritionuk.com
www.abbottnutritionuk.com/display.aspx?id=195

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Hypnotherapy directory

This site provides a hypnotherapy support network, enabling patients to find a hypnotherapist close to them and appropriate for their needs.

 

www.hypnotherapy-directory.org.uk


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I


IBD UK
An online service providing information and discussion on inflammatory bowel disease (IBD).
www.ibduk.com


Ileostomy & Internal Pouch Support Group (IA)
A UK registered charity whose primary aim is to help people who have to undergo surgery which involves the removal of their colon (known as a colectomy) and the creation of either an ileostomy or an ileo-anal pouch.
www.the-ia.org.uk


Incontinence (Bowel)
www.bladderandbowelfoundation.org


Inflammatory Bowel Disease (IBD):Including Ulcerative Colitis & Crohn’s Disease


Irritable Bowel Syndrome (IBS) 
www.theguttrust.org

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J


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K


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L


Lactose Intolerance Websites
No Cow’s Milk For Me Thanks
www.dspace.dial.pipex.com/town/park/gfm11/index.htm


Liver Disease Websites
General liver disease related websites:- 

Specialist liver disease websites:

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Liver Transplant Support
www.livertransplantsupport.com


Living With Reflux
www.livingwithreflux.org

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M


Macmillan Cancer Support
A registered charity who aim to support and improve the lives of all people living with cancer and their families and carers.
www.macmillan.org.uk


Mainliners
A charity that works across blood-borne viruses, drugs and sexual health to promote standards and access to related services.
www.mainliners.org.uk


Marie Curie Cancer Care
Marie Curie Nurses provide free nursing care to cancer patients and those with other terminal illnesses in their own homes. A range of patient information leaflets providing general health related information to people with cancer and a variety of support and information links are provided.
www.mariecurie.org.uk


My Wave Length
A free, web-based support network where you can contact other people with the same cancer type as you or your relative or friend.
www.mywavelength.com/search_people_h.php

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N


Narcotics Anonymous
A fellowship of recovering addicts who aim to help each other to stay clean. The only requirement for membership is a desire to stop using.
www.ukna.org


National Association for Colitis & Crohn’s Disease (NACC)
Offers support and information for those who have Ulcerative Colitis or Crohn's Disease, their families and friends and health professionals.
www.nacc.org.uk/content/home.asp


National Cancer Institute (NCI)
Detailed and comprehensive American website dedicated to cancer
www.cancer.gov


NHS Bowel Cancer Screening Programme (BCSP)
Comprehensive overview of the NHS Bowel Cancer Screening Programme (BCSP)
www.cancerscreening.nhs.uk/bowel/index.html


NHS Direct
NHS Direct is the online portal for NHS patients, giving information on the NHS itself plus guides to health and common illnesses.
www.nhsdirect.nhs.uk


NHS Hepatitis C Awareness
A site put together by the NHS to provide patients and healthcare professionals with information on Hepatitis C.
www.nhs.uk/hepatitisc/hcp/Pages/default.aspx


No Cow’s Milk For Me Thanks
The UK’s first site for people who are dairy allergic or lactose intolerant.
www.dspace.dial.pipex.com/town/park/gfm11/index.htm

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O


Obstetric Cholestasis Support (OCS)
Aims to provide support to mothers who have the condition and information to those who think they may have the condition.
www.ocsupport.org.uk


Ochre
A national cancer charity for people affected by oesophageal cancer.
www.ochrecharity.co.uk


Oesophageal Cancer Websites


 

Oesophageal Patients Association (OPA)
A registered charity aimed at supporting patients and their families with newly diagnosed oesophageal and gastric cancer through engagement with former sufferers of these conditions.
www.opa.org.uk

 

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P


Pancreatic Cancer UK
The only national charity dedicated to pancreatic cancer funding research and providing support to patients and their families.
www.pancreaticcancer.org.uk


Pancreatitis Supporters’ Network
Aims to educate patients and the general public about pancreatitis and emphasise the importance of treatment by a specalist in the field.
www.pancreatitis.org.uk


Patients Association
A charitable organisation providing patients with an opportunity to raise concerns and share experiences of healthcare and by working with healthcare providers improving services.
www.patients-association.org.uk


Patients on Intravenous and Nasogastric Nutritional Therapy (PINNT)
Aims to help patients, carers and healthcare professionals to understand intravenous and nasogastric nutritional therapy and to provide contact between patients undergoing these treatments.
www.pinnt.com


Patient Support & Research Into Barrett’s Oesophagus (PROBE)
The patient support network of the Barrett’s Oesophagus Foundation.
www.barrettsfoundation.org.uk/probe


Patient UK
Free, up-to-date health information aimed at patients.
www.patient.co.uk


Polyposis Registry
The Polyposis Registry at St. Mark’s Hospital, London provides information and support for families with Familial Adenomatous Polyposis in the UK.
www.polyposisregistry.org.uk


Primary Biliary Cirrhosis (PBC) Foundation UK Ltd
A charity which provides help, support and information for PBC sufferers, their families and friends.
www.pbcfoundation.org.uk


Primary Sclerosing  Cholangitis (PSC) Support
Aims to support patients suffering from PSC by providing information on the condition and to help PSC sufferers keep in touch.
www.psc-support.demon.co.uk

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R


Reflux Disease Websites
Living With Reflux www.livingwithreflux.org

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S


Self-Help Addiction Recovery Programme (SHARP): Liverpool
A therapeutic haven for addiction recovery based in Liverpool city centre.
www.actiononaddiction.org.uk/treatment/sharp_liverpool


SALTS Healthcare
Salts Healthcare is a provider of user friendly stoma care products designed to promote quality of life.
www.saltstomacare.co.uk

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T


Telangiectasia Self-Help Group
A self-help group which maintains a register of sufferers and facilitates contact between affected families.
www.telangiectasia.co.uk


Transplant Support Network (TSN)
A nationwide network of volunteer transplant patients and their carers who provide local support (usually over the telephone) for others coping with solid organ transplants and mechanical implants.
www.transplantsupportnetwork.org.uk

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U


Ulcerative Colitis Websites

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V


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W


Willow Healthcare Services Ltd
Delivers quality homecare artificial nutrition services.
www.willowhs.co.uk


Wilson’s Disease Support Group UK (WDSG-UK)
An all-volunteer organisation which strives to promote the well-being of patients with Wilson's Disease and their families and friends.
www.wilsonsdisease.org.uk/WDSG-P0.asp

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X


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Y


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Z





 


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