Patient/donor support organisations

These links are provided for additional reference and information only and do not constitute any form of endorsement by NHSBT.

If you are aware of a site that might be of interest to users of this website please contact the webmaster with further details.

British Kidney Patient Association

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Founded by the mother of a young kidney transplant recipient in 1975, the Association supports kidney patients young and old, providing advice, financial help and much needed holidays with their families.

British Liver Trust

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British Liver Trust is a national adult liver health charity dedicated to reducing the incidence and impact of all forms of liver disease in this country.

Cardiomyopathy Association

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This site is designed to provide comprehensive information on the main forms of the heart muscle disease known as cardiomyopathy

Child Bereavement Trust

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The Child Bereavement Trust provides specialised training and support for professionals to improve their response to the needs of bereaved families.

Information & Support Line (for Professionals) 0845 357 1000  

The Trust also produces resources and information for children and families.

Children's Liver Disease Foundation

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CLDF is a UK charity which takes action against the effects of childhood liver disease by providing information, emotional support, research funds and a voice for all affected.

Cystic Fibrosis Trust (CFTrust)

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The Trust is the UKs only national charity dedicated to all aspects of Cystic Fifbrosis (CF). It funds research to treat and cure the disease and aims to ensure the appropriate clinical care and support is provided to all patients.

Give a Kidney

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Give a Kidney is a charitable organisation set up in 2011 by a group of people committed to raising awareness of, and supporting, altruistic living kidney donation. The founding members include 10 people who each gave a kidney to a stranger under the NHS altruistic living kidney donor scheme.

Heart failure matters

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At least 14 million people in Europe have heart failure! This website, developed under the direction of the Heart Failure Association of the European Society of Cardiology, aims to provide clear and reliable information and practical advice to patients with heart failure, their families and carers.

By improving knowledge and understanding of heart failure the HFA hope to show that with simple changes people will be able to manage their health more effectively so that they can live longer and more active lives.

Irish Kidney Association

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The Association's prime role is to support patients and their families by providing information on kidney diseases, associated medical scenarios and social benefits and entitlements. It provides funds for research into kidney diseases and is the only organisation representing the views of Irish kidney patients, continually lobbying on their behalf across a wide variety of agencies. The Association is also the contact for the Irish donorcard.

Kidney Kids

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Kidney Kids is a new charity dedicated to children and families affected by kidney disease/failure. Kidney Kids brings together families in order to provide help and support, help raise funds for new research, and work to ensure better treatment experiences and outcomes for children. They actively support organ donor awareness initiatives.

Liver transplant support

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'On-line help by those who have been there!' The site aims to inform visitors what happens from diagnosis to the expectation of a successful transplant, via the experiences of others.

Liver4Life (L4L)

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Liver4Life (L4L) is a new and modern charity dedicated to supporting any person affected by a liver condition in the UK.

L4L offers support and education, as well as undertaking campaigns on behalf of people with a liver condition, to improve their care, their treatment and their support services.

L4L recognises the importance of preventing liver disease and the early detection of a liver condition, liver disease and liver cancer in the UK.

Lung & Asthma Information Agency

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The LAIA is a small academic unit in the St George's Hospital Medical School providing an ad-hoc information service to its sponsors which include:

the British Lung Foundation

the British Thoracic Society

The Agency also produces factsheets on lung diseases. These can be downloaded from the site as pdfs.

Download the latest factsheet on Lung and heart-lung transplantation.

National Kidney Federation (NKF)

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The NKF is the national charity in the United Kingdom Run by Kidney Patients for Kidney Patients. The Federation's aim throughout the UK is to promote both the best renal medical practice and treatment, and the health of persons suffering from Chronic Kidney Disease (CKD) or Established Renal Failure (ERF). The NKF also supports the related needs of those relatives and friends who care for kidney patients

Northern Ireland Transplant Association (NITA)

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NITA was founded by heart recipient David Robinson to provide support for people awaiting organ transplants, transplant recipients and donor families. Recognising that transplantation raises all sorts of difficult, practical and emotional issues, the Association aims to complement the information and support of medical staff and to provide community awareness of the need for organ donation.

PBC Foundation

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Primary Biliary Cirrhosis (PBC) is a slow, chronic liver disease which can cause progressive destruction of the bile ducts in the liver. It predominantly affects females at a ratio of approximately nine women to every one man.The PBC Foundation is a charity offering support and information to PBC sufferers, their friends and families.

PKD Charity

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Polycystic Kidney Disease (PKD) is reportedly the world’s most common life-threatening genetic condition. The PKD Charity is the only one in the UK dedicated to addressing the concerns raised by sufferers of the disease. It aims to provide information, raise awareness and fund research into the cause, treatment and cure of the disease.

PSC Support

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A UK charity dedicated to helping people affected by Primary Sclerosing Cholangitis (PSC). PSC Support is run by a small team of volunteers, totally funded from charitable donations, and here to help anyone affected by Primary Sclerosing Cholangitis.

Pulmonary Hypertension Association UK

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The Association aims to provide support, understanding, and information for all those people whose lives are touched by Pulmonary Hypertension, making the lives of patients, relatives and carers easier and more able to cope with the challenges that Pulmonary Hypertension imposes.

South Asian Health Foundation

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The South Asian Health Foundation (SAHF) aims to promote improvements in the quality of, and access to, healthcare and health promotion in South Asians. The organisation achieves this by the promotion of high quality scholarship and research, health education at a grassroots level within communities, health advocacy and advisory input into organisations and processes.

TalkTransplant

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Aims to provide transplant patients, their families and their carers with a comprehensive online resource of information services to improve their day-to-day life, before and after transplantation. It is designed to support, not replace, the relationship that exists between a patient/relative and their physician.

To Transplant and Beyond (heart-transplants.co.uk)

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John Fisher started work on this site just eight days after his heart transplant op! John describes the site as packed full of facts from the horse's mouth, examples of what transplantation involves and what he, and other patients, have achieved since their operations. In addition there is information on pre- and post-transplant tests and even the odd transplant-related joke.

Transplant Kids

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This is a website created and maintained by the Grays, whose son Aaron appears in 'Life stories' with the aim of providing answers, a source of information, contacts and possibly even a way to express your own personal thoughts and feelings via the message board and personal stories pages.

The information is provided in words that a child may understand and with a degree of editorial licence, recognising that every transplant centre has it’s own protocols and every child is unique.

Transplant Support Network (TSN)

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The TSN is a nationwide network of volunteer transplant patients and their carers, who provide locally based support for others coping with transplantation. Short or long term support from outside the family has been found to play an invaluable part in the waiting, adjustment and recovery processes.
The TSN support lines are 0800 027 4490/4491.

Understanding your eye condition

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The Royal College of Ophthalmologists have designed a series of "Understanding" leaflets to help you, your friends and family understand a little bit more about your eye condition. Each leaflet gives an introduction to the condition, how it can affect you, the main treatment available and how to make the most of your sight.

Welsh Kidney Patients' Association (WKPA)

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Membership of the WKPA is open to all dialysis and transplant patients in Wales and their carers. It has a befriending system and self-help groups for patients and their families to share information and experiences.

Join the Organ Donor Register 0300 123 23 23