These links are provided for additional reference and information only and do not constitute any form of endorsement by UK Transplant.
If you are aware of a site that might be of interest to users of the UK Transplant website please contact the Webmaster with further details.
British Ethnic Health Awareness Foundation
A registered National Trust for community support, health care advice, medical information, and patient's advocacy. BEHAF's mission is to promote self-help, healthy eating habits, healthy living styles, and raise health awareness in the wider community.
The Foundation is committed to providing the latest health information in all media, using a unique team with a wide range of presentational skills including native speakers. Italso provides language support services & organises health awareness training sessions for the volunteers from the minority ethnic communities.
British Kidney Patient Association
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.
There are many local Kidney Patients Associations offering support to dialysis and kidney transplant patients and their families. The Swindon KPA is just one of these.
British Liver Trust
The Trust is the only national UK charity concerned with all forms of adult liver disease. The charity aims to inform, support and advise people who are concerned about or living with liver disease. This well-constructed website contains useful information on how the liver works, liver diseases, a news desk and message boards for both patients and nurses together with details of research funding. Several sections have been translated into other languages.
Cardiomyopathy Association
This site is designed to provide comprehensive information on the main forms of the heart muscle disease known as cardiomyopathy. A visit to the message board makes one feel lucky to be even reasonably fit!
Child Bereavement Trust
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 (CLDF)
The Foundation's vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.
It's mission is to fight childhood liver disease through funding pioneering medical research, providing effective education and giving professional and caring support to families and young people with liver disease.
Cystic Fibrosis Trust (CFTrust)
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.
Heart failure matters
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
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.
Liver transplant support
'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.
Lung & Asthma Information Agency
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 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)
NKF is a federation of over 70 separate Kidney Patient Associations, forming a UK-wide charity run by patients for patients. It aims to promote the welfare of persons suffering from kidney disease or failure together with that of their relatives and friends. Look out for the "know your numbers" section which guides patients through the results of their ongoing screening.
NKF's National Kidney Patients' Helpline aims to provide information to patients, carers, family, friends and medical professionals who can seek advice/help or obtain literature using one telephone number (0845 601 0209). The helpline, which operates 09:00 to 17:00, Monday to Friday can also be contacted by email. The Federation website www.kidney.org.uk contains over 500 pages of medical information for kidney patients and their carers.
National Kidney Helpline - Provided by the Kidney Research UK for kidney patients, their relatives and carers. The Helpline can be contacted by email or by telephone (0845 300 1499) 09:00 to 17:30 Monday to Friday.
Northern Ireland Transplant Association (NITA)
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
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
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.
Pulmonary Hypertension Association UK
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
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
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 his/her physician.
To transplant and beyond (heart-transplants.co.uk)
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 Central (USA)
Transplant Central is a support network dedicated to the sharing of information by patients, families, spouses, doctors and surgeons who have been through the organ transplant experience or face an organ transplant.
Transplant Kids
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)
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
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. Details of who to contact for more information are also included. You can also download a leaflet specifically relating to corneal transplantation.
Welsh Kidney Patients' Association (WKPA)
The Association covers all of the region bar North Wales and has over 1400 patient members. Membership of the WKPA is free and is open to all dialysis and transplant patients in Wales and their carers. It has a befriending system and develop self-help groups for patients and their families to share information and experiences.
The Association liaises with hospital dialysis and transplant units, together with social work departments and statutory authorities, and more recently with the Welsh Assembly on behalf of patients and their families.